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Author Topic: Whats your opinion? Should I start Meds?  (Read 19208 times)

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Offline activehiv

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Whats your opinion? Should I start Meds?
« on: July 03, 2010, 05:08:14 PM »
Hey Everyone

I just got my 2nd set of numbers back the other day

CD4 557
VL 2300

My doctor said that the standard has changed and that I should start meds, but I hear mixed things about this.  What your opinion?  What are some of the pros and cons of staring meds.  Also what is the difference between all of the meds? 

Offline Ann

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Re: Whats your opinion? Should I start Meds?
« Reply #1 on: July 03, 2010, 07:30:22 PM »
What? Your doctor needs to read the new recommendations again. They say you should start between 500 and 350. You certainly don't need meds at this time, in fact, with numbers like those, you could go years yet. I've been poz for 13 years and I still don't need meds.
Condoms are a girl's best friend

Condom and Lube Info  



"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline BlueMoon

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  • Calling from the Fun House
Re: Whats your opinion? Should I start Meds?
« Reply #2 on: July 03, 2010, 07:43:34 PM »
I would want to see at least one CD4 result under 500 before considering meds with such a low viral load.  Did you get a percentage number?

Also you should make sure of your meds funding before beginning treatment.  ADAP support seems to be crumbling away.
...................VL.....CD4.....%
-----------------------------------------
08/10-- ......<40.....290.....42
05/10-- ......<48.....290.....46
02/10-- ......<48.....481.....44
10/09-- ......<48.....277.....46
07/09-- ......<48.....300.....38
05/09-- ........51.....449.....39
03/09-- Added Isentress
02/09-- ........65.....299.....34
11/08-- ........62.....242.....40
08/08-- ........66.....212.....29
05/08-- ......202.....217.....27
03/08-- ....5210.....187.....21
02/08-- Began Truvada/Reyataz/Norvir
12/07-- 273,000.....157.....22
11/07-- 229,000.....209.....22
10/07-- Diagnosis

It's a complex world.

Offline Boze

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Re: Whats your opinion? Should I start Meds?
« Reply #3 on: July 03, 2010, 07:49:55 PM »
This is a very contentious topic right now. As pointed out by Ann, the latest US recommendations advocate starting between 350 and 500. However, if you look at the actual votes for the recommendation, half the doctors voted to start **right away** regardless of CD4 count and half opted for <500 CD4. So the US medical community  is evenly split on this issue.

I recently found out my status and decided to start treatment early with similar numbers to yours (slightly better CD4). I outlined my reasoning in this post: http://forums.poz.com/index.php?topic=32667.msg401719#msg401719

Long story short - given all the information available now, I believe in starting early rather than late. This is both for the sake of individual himself and those he is in a relationship with.

However - as pointed out by BlueMoon, you should plan where you'll get the drugs. If you are uncertain about funding, generic Atripla is $150 a month online.
==========
Aug08 - Seroconversion
Mar10 - Diagnosis; cd4 690 - VL 19,000
Apr10 - cd4 600
May10 - VL 4,500
Jun10 - started Atripla ; VL 113
Jul 10 - UD vl, CD4 590
Aug 10 - UD, CD4 810, 52%
Nov 10 - UD, CD4 980

Offline phildinftlaudy

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  • sweet Ann what you think babe...
Re: Whats your opinion? Should I start Meds?
« Reply #4 on: July 03, 2010, 07:55:31 PM »
I agree with Ann and the other post -- I started meds when my cd4s were 473 and viral load was around 3,000 ----  while I have had success with Atripla, I kind of wish I would've waited for one or two more lab results to "take the plunge."  Who knows if my immune system would have kicked my cd4s back up to 500+ (as that was the only lab below 500) and my VL had actually fallen on that lab --- I may have been in Ann's category of long term non progressors.  But, now since I have started the meds, I have to continue to take and have made that commitment.

I would suggest waiting - unless there are other reasons why your doc is wanting you to start that make medical sense --- Ultimately, it will be your decision and you will receive support whatever your choice.
September 13, 2008 - diagnosed +
Labs:
Date    CD4    %   VL     Date  CD4  %   VL
10/08  636    35  510   9/09 473  38 2900  12/4/09 Atripla
12/09  540    30    60   
12/10  740    41  <48   
8/11    667    36  <20  
03/12  1,041  42  <20
05/12  1,241  47  <20
08/12   780    37  <20
11/12   549    35  <20
02/12  1,102  42  <20
11/12   549    35  <20

Offline john33

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  • Posts: 407
Re: Whats your opinion? Should I start Meds?
« Reply #5 on: July 03, 2010, 08:31:18 PM »
I agree with the other posts as well,

Wait and see what happens, your CD4's may yet go back up. As has already been said, the recommendations are for starting between 350 and 500, so I'd say see what the next set of numbers are and don't rush into anything.

John

Offline hotpuppy

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  • Posts: 555
Re: Whats your opinion? Should I start Meds?
« Reply #6 on: July 03, 2010, 11:11:48 PM »
There are varying schools of thought on this.  While a forum can provide useful information, it shouldn't take the place of your doctor's advice.  Have you asked your doctor why he wants you to start meds?

Ann is 100% correct on the current guidelines.

That said here is a brief synopsis of the positions:
- At one time the standard was ASAP as it is thought that HIV gradually damages the immune system and the sooner you stop this the better the long term outcome.
- Most drugs have side effects and only you and your physician can determine what is tolerable. 
- Most drugs benefit from being taken on a regular schedule and it's important that you are ready to take that responsibility.  Missing doses is not good for you and can lead to resistance.
- Not too long ago the standard was under 350, so it has recently been revised upwards.

Each physician has a different philosophy regarding when to start treatment.  There isn't a hard right or wrong here, just different approaches.  A good physician (in my opinion) will listen to patient concerns and incorporate them into succesful treatment.  It is your right to hold off on treatment if you have a *valid* reason for doing so.

As an example, that likely does not apply to you.... I should be on meds, but I have some liver issues right now.  I discussed it with my physician and we agreed to hold off on meds to focus on the liver issues.  If my viral load goes to high or my CD4 too low we will start meds.  We agreed on the boundaries, so there aren't any arbitrary decisions.  In addition, at my suggestion, I'm doing CBC (basic bloodwork) on a monthly basis so we can more closely track my liver numbers.  Doc says it isn't necessary, but it won't hurt.  My take is that the tests are cheap ($11/mo) and my liver can't be replaced so we need to keep a close watch on it. 

So my point is that healthcare is a team effort and you're on the team.
Don't obsess over the wrong things.  Life isn't about your numbers, it isn't about this forum, it isn't about someone's opinion.  It's about getting out there and enjoying it.   I am a person with HIV - not the other way around.

Offline mecch

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  • red pill? or blue pill?
Re: Whats your opinion? Should I start Meds?
« Reply #7 on: July 04, 2010, 06:17:46 AM »
Would be better to give opinion based on your history of HIV+.
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline MitchMiller

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  • Posts: 482
Re: Whats your opinion? Should I start Meds?
« Reply #8 on: July 05, 2010, 10:06:16 PM »
Given your VL is so low without meds, if I were you, I would concoct a "regimen" of natural substances documented scientifically to interfere with HIV replication.  There are quite a few, two of which have gotten a bit of dialogue on the forums:  selenium and green tea extract (I believe you would need the pills instead of just drinking green tea).  Tumeric is also thought to act as a natural integrase inhibitor.  You would probably want to spend a lot of hours doing your own investigation...and I would guess it would involve at least five natural agents.   And just like HIV meds, you would probably need to be 100% adherent and ensure that the dose approximates therapeutic levels reported in the scientific literature (not necessarily an easy task and your doc would be probably totally worthless in this pursuit).

It would be interesting to see if such a regimen has any effect on one with a very low VL. 
If not, nothing lost but $$$.  If so, spares you the side-effects of meds.
« Last Edit: July 05, 2010, 10:12:15 PM by MitchMiller »

Offline activehiv

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  • Posts: 24
Re: Whats your opinion? Should I start Meds?
« Reply #9 on: July 08, 2010, 01:57:36 AM »
Thanks everyone for your thoughts.  I still dont know what to do.  I'm kinda leaning on waiting for the next set of numbers.  Kinda on account on what happen to my bf.  He just started Aprila and broke out with a rash.  The docs said it was normal but again I don't know what kind of side affects I will have.  As far as why my doc said I should start meds, he wants my vl to be undetectable.  I'll keep you all updated.  I have an appointment scheduled for the end of the month so I have some time to decide if I'm gonna go through with starting treatment.

Offline odyssey

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Re: Whats your opinion? Should I start Meds?
« Reply #10 on: July 08, 2010, 08:43:11 PM »
However, if you look at the actual votes for the recommendation, half the doctors voted to start **right away** regardless of CD4 count and half opted for <500 CD4.

Boze is sadly mistaken. If you review the Guidelines for the Use of Antiretroviral Agents in HIV-1-Infected Adults and Adolescents as published by the Centers for Disease Control December 1, 2009, you will read the following: "Antiretroviral therapy is recommended for patients with CD4 counts between 350 and 500 cells/mm3. The Panel was divided on the strength of this recommendation: 55% of Panel members for strong recommendation (A) and 45% for moderate recommendation (B) (A/B-II). For patients with CD4 counts >500 cells/mm3, 50% of Panel members favor starting antiretroviral therapy (B); the other 50% of members view treatment as optional (C) in this setting (B/C-III)."

So, in fact, all the doctors encourage starting HAART when one's CD4 count drops below 500, though some only make this a moderate recommendation. However, only half of the doctors make a moderate recommendation for treatment above 500 cells, while the other half view it as completely optional. Boze's post is factually incorrect and entirely misleading. Feel free to read and/or download the entire guidelines here:

http://aidsinfo.nih.gov/contentfiles/AdultandAdolescentGL.pdf
01/09/09- diagnosed HIV+
01/16/09   CD4-425    22%  VL- 32,415
11/09- started Reyetaz/Norvir/Truvada
03/10- stopped R/N/T
10/18/11   CD4- 328   20%  VL- 84,000
10/25/11   CD4- 386   22%
10/28/11- start Truvada/Reyetaz/Norvir
12/30/11  CD4- 523  29%
03/08/12  CD4- 503  31%  VL 57
07/02/12  CD4- 897  43%
08/31/12  CD4- 745  39%
12/27/12  CD4- 884  40%
03/28/13  CD4- 819  39%
07/19/13  CD4- 739  40%
10/17/13  CD4- 535  36%
01/16/14  CD4- 743  43%

02/14- switched from R/N/T to Tivicay/Epzicom because of CKD 3 suspected from tenofovir.

03/14- switched back to R/N/T due to severe nausea and inability to eat on T/E.
 
04/01/14 CD4- 898  42%   VL-

Offline Boze

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  • Posts: 477
Re: Whats your opinion? Should I start Meds?
« Reply #11 on: July 09, 2010, 05:03:15 PM »
Odyssey,

Huh? You just repeated what i said but in more words, adding at the end that my post is 'entirely misleading'. I fail to see how you corrected my post.

Activehiv - i would still recommend starting. The opinion count you receive here is not indicative of the top doctors' view who are mostly in favor of early start. To me this is just common sense - to start BEFORE your immune system is compromised. If you are worried about SE, canvas the experience of people who started with high CD4. I personally think it makes a difference - the earlier you start, the easier it is. All the worry about damage from HIV drugs is predicated on the experience of the 90s. Drugs today are in a different league, most people just pop their daily pill and forget about it.  The whole time you wait, you'll be thinking if now is the time to start, just adding worry.
==========
Aug08 - Seroconversion
Mar10 - Diagnosis; cd4 690 - VL 19,000
Apr10 - cd4 600
May10 - VL 4,500
Jun10 - started Atripla ; VL 113
Jul 10 - UD vl, CD4 590
Aug 10 - UD, CD4 810, 52%
Nov 10 - UD, CD4 980

Offline Ann

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  • It just is, OK?
    • Num is sum qui mentiar tibi?
Re: Whats your opinion? Should I start Meds?
« Reply #12 on: July 10, 2010, 09:56:39 AM »
The whole time you wait, you'll be thinking if now is the time to start, just adding worry.

I've been med free for thirteen years and I don't worry about it.
Condoms are a girl's best friend

Condom and Lube Info  



"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline Boze

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  • Posts: 477
Re: Whats your opinion? Should I start Meds?
« Reply #13 on: July 10, 2010, 02:06:10 PM »
I've been med free for thirteen years and I don't worry about it.

But you are (as I understand) a Long-term nonprogressor - you are able to control the virus and keep a steady CD4 count. This makes you rather unique. Unfortunately most people are not LNTP - and have to face  declining cd4 counts. This must be pretty stressful - as they know what they  will have to start HAART and are just waiting for the day.

The other issue - is the fact that he will not be infectious on HAART. I don't want to split hairs on how effective (99 or 99.9%) it is, but people on HAART who reach UD don't transmit. I would personally feel much better knowing that I can't get other people sick - however which way it may happen.
==========
Aug08 - Seroconversion
Mar10 - Diagnosis; cd4 690 - VL 19,000
Apr10 - cd4 600
May10 - VL 4,500
Jun10 - started Atripla ; VL 113
Jul 10 - UD vl, CD4 590
Aug 10 - UD, CD4 810, 52%
Nov 10 - UD, CD4 980

Offline wtfimpoz

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  • Let's make biscuits!
Re: Whats your opinion? Should I start Meds?
« Reply #14 on: July 10, 2010, 02:09:30 PM »
What? Your doctor needs to read the new recommendations again. They say you should start between 500 and 350. You certainly don't need meds at this time, in fact, with numbers like those, you could go years yet. I've been poz for 13 years and I still don't need meds.

Ann, I don't know if I'm violating some rule of this message board or not, but are you a long term nonprogressor? 
09/01/2009-neg
mid april, 2010, "flu like illness".
06/01/2010-weakly reactive ELISA, indeterminant WB
06/06/2010-reactive ELISA, confirmed positive.

DATE       CD4     %     VL
07/15/10  423     33    88k
08/28/10  489     19    189k
09/06/10-Started ATRIPLA
09/15/10  420     38    1400
11/21/10  517     25    51

Offline Ann

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    • Num is sum qui mentiar tibi?
Re: Whats your opinion? Should I start Meds?
« Reply #15 on: July 10, 2010, 02:15:00 PM »
Ann, I don't know if I'm violating some rule of this message board or not, but are you a long term nonprogressor? 

No, I'm a long-term slow progressor. I don't quite fit the criteria for LTNP. I will need meds at some point - it looks like I've probably got another few years. Remind me on Monday to post my number history if you want to see it. It used to be in my profile, but when we moved to the new server, for some reason the bio section of our profiles disappeared.
Condoms are a girl's best friend

Condom and Lube Info  



"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline odyssey

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  • Posts: 767
  • One Crazy Mofo!
Re: Whats your opinion? Should I start Meds?
« Reply #16 on: July 10, 2010, 06:19:07 PM »
However, if you look at the actual votes for the recommendation, half the doctors voted to start **right away** regardless of CD4 count and half opted for <500 CD4. So the US medical community  is evenly split on this issue.

Boze- there is a clear difference in what I repeated from the guidelines and what you've said. You are implying that half the doctors believe meds should be started no matter what the CD4 count, and the other half recommended waiting for the count to drop below 500. This is simply not the case. All of the doctors recommend treatment below 500! Among the doctors recommending treatment above 500, half view it is a moderate recommendation, and half view it as optional. There is definitely a difference!
01/09/09- diagnosed HIV+
01/16/09   CD4-425    22%  VL- 32,415
11/09- started Reyetaz/Norvir/Truvada
03/10- stopped R/N/T
10/18/11   CD4- 328   20%  VL- 84,000
10/25/11   CD4- 386   22%
10/28/11- start Truvada/Reyetaz/Norvir
12/30/11  CD4- 523  29%
03/08/12  CD4- 503  31%  VL 57
07/02/12  CD4- 897  43%
08/31/12  CD4- 745  39%
12/27/12  CD4- 884  40%
03/28/13  CD4- 819  39%
07/19/13  CD4- 739  40%
10/17/13  CD4- 535  36%
01/16/14  CD4- 743  43%

02/14- switched from R/N/T to Tivicay/Epzicom because of CKD 3 suspected from tenofovir.

03/14- switched back to R/N/T due to severe nausea and inability to eat on T/E.
 
04/01/14 CD4- 898  42%   VL-

Offline Boze

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Re: Whats your opinion? Should I start Meds?
« Reply #17 on: July 10, 2010, 07:06:14 PM »
Boze- there is a clear difference in what I repeated from the guidelines and what you've said. You are implying that half the doctors believe meds should be started no matter what the CD4 count, and the other half recommended waiting for the count to drop below 500. This is simply not the case.

All of the doctors recommend treatment below 500! Among the doctors recommending treatment above 500, half view it is a moderate recommendation, and half view it as optional. There is definitely a difference!

Clearly, the doctor who recommends starting at ANY cd4 count would also recommend starting <500. Isn't that obvious? The words 'any cd4 count' mean above AND below 500 :)

I canvassed the opinions of these top doctors in the field:

Joel Gallant - John Hopkins - http://www.thebody.com/content/art39651.html
Paul Sax - Harvard -  http://www.medscape.com/index/list_3466_0
Roy Gullick - Cornell -   http://www.med.cornell.edu/research/rmgulick/

and a few others (don't remember names) and they all recommended starting ASAP, if the person "was ready". This is a euphemism meaning that the individual is ready to stick to rigorous regimen and would not skip doses / can afford the treatment.
==========
Aug08 - Seroconversion
Mar10 - Diagnosis; cd4 690 - VL 19,000
Apr10 - cd4 600
May10 - VL 4,500
Jun10 - started Atripla ; VL 113
Jul 10 - UD vl, CD4 590
Aug 10 - UD, CD4 810, 52%
Nov 10 - UD, CD4 980

Offline wtfimpoz

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  • Let's make biscuits!
Re: Whats your opinion? Should I start Meds?
« Reply #18 on: July 10, 2010, 07:18:21 PM »
Clearly, the doctor who recommends starting at ANY cd4 count would also recommend starting <500. Isn't that obvious? The words 'any cd4 count' mean above AND below 500 :)

I canvassed the opinions of these top doctors in the field:

Joel Gallant - John Hopkins - http://www.thebody.com/content/art39651.html
Paul Sax - Harvard -  http://www.medscape.com/index/list_3466_0
Roy Gullick - Cornell -   http://www.med.cornell.edu/research/rmgulick/

and a few others (don't remember names) and they all recommended starting ASAP, if the person "was ready". This is a euphemism meaning that the individual is ready to stick to rigorous regimen and would not skip doses / can afford the treatment.

As someone who is hashing over when a good time to start treatment would be, allow me to volunteer that cutting edge medical knowledge MAY NOT be the best thing.  We really don't know what these drugs DO over the long run and many of them still have some VERY strong side effects.  The message of TODAY's doctors is pretty straightforward...start treatment immediately.  The message of YESTERDAYS doctors has also been pretty straightforward...that the drugs were too strong to start treatment immediately.  Before that the message was that the disease was horrible, so drugs should be started immediately.  Before that we were frying people's cances for future care and poisoning them with monotherapy.  What are we going to believe in five years?  In the meantime,an earlier start time means earlier resistance issues, earlier exposure to side effects and and earlier commitment to a drug regime which MAY NOT be sustainable throughout the course of your life (unless you live in a non-american western country). 

Personally, I'd start if I were you.  your CD4 count is now below "normal" range, and its probably better to reduce your liklihood of being infectious.  That said, don't jump into the deep end just because THIS WEEK some cookie cutter MD has decided that an early start is a good idea.
09/01/2009-neg
mid april, 2010, "flu like illness".
06/01/2010-weakly reactive ELISA, indeterminant WB
06/06/2010-reactive ELISA, confirmed positive.

DATE       CD4     %     VL
07/15/10  423     33    88k
08/28/10  489     19    189k
09/06/10-Started ATRIPLA
09/15/10  420     38    1400
11/21/10  517     25    51

Offline mecch

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  • Posts: 12,165
  • red pill? or blue pill?
Re: Whats your opinion? Should I start Meds?
« Reply #19 on: July 10, 2010, 07:22:45 PM »
Cookie cutter doctors? Pretty impressive list in my opinion.
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline Boze

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  • Posts: 477
Re: Whats your opinion? Should I start Meds?
« Reply #20 on: July 10, 2010, 07:29:31 PM »
As someone who is hashing over when a good time to start treatment would be, allow me to volunteer that cutting edge medical knowledge MAY NOT be the best thing.  We really don't know what these drugs DO over the long run and many of them still have some VERY strong side effects.  The message of TODAY's doctors is pretty straightforward...start treatment immediately.  The message of YESTERDAYS doctors has also been pretty straightforward...that the drugs were too strong to start treatment immediately.  Before that the message was that the disease was horrible, so drugs should be started immediately.  Before that we were frying people's cances for future care and poisoning them with monotherapy.  What are we going to believe in five years?  In the meantime,an earlier start time means earlier resistance issues, earlier exposure to side effects and and earlier commitment to a drug regime which MAY NOT be sustainable throughout the course of your life (unless you live in a non-american western country). 

Personally, I'd start if I were you.  your CD4 count is now below "normal" range, and its probably better to reduce your liklihood of being infectious.  That said, don't jump into the deep end just because THIS WEEK some cookie cutter MD has decided that an early start is a good idea.

Clearly the 'latest medical opinion' is based on what drugs are available NOW. The reason a lot of doctors recommend starting early is because the new drugs are so well tolerated. Go ahead and read people's reports on Isentress/Truvada combination - they are all raving.

The big unknown is what damage the drugs will do in the long term, even if they pose no side-effects today. But that has to be weighed AGAINST the damage done by the virus + inflamation while immune system tries to cope with it on its own. Again - doctors today seem to believe that latter is worse.

I wish we had a crystal ball - barring that, just have to work with probabilities.
==========
Aug08 - Seroconversion
Mar10 - Diagnosis; cd4 690 - VL 19,000
Apr10 - cd4 600
May10 - VL 4,500
Jun10 - started Atripla ; VL 113
Jul 10 - UD vl, CD4 590
Aug 10 - UD, CD4 810, 52%
Nov 10 - UD, CD4 980

Offline Ann

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Re: Whats your opinion? Should I start Meds?
« Reply #21 on: July 10, 2010, 10:16:20 PM »
My hiv doc is a highly respected and published hiv pharmacologist/researcher and he recommends waiting until you are clearly on a downward trend with your CD4s - and he's talking about the new meds.
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"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline wtfimpoz

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Re: Whats your opinion? Should I start Meds?
« Reply #22 on: July 11, 2010, 01:16:58 AM »
My hiv doc is a highly respected and published hiv pharmacologist/researcher and he recommends waiting until you are clearly on a downward trend with your CD4s - and he's talking about the new meds.

Thats an interesting point you mention Ann.  I was reading some article on Thebody.com where a panel of physicians discussed what they would do if they were positive.  The only one who stated he would wait until CD4 dropped a minimum threshold was British.  I wonder how much of our current "hit it hard with magic pills and assume the consequences aren't as bad as the virus" mentality is a result of culture?
09/01/2009-neg
mid april, 2010, "flu like illness".
06/01/2010-weakly reactive ELISA, indeterminant WB
06/06/2010-reactive ELISA, confirmed positive.

DATE       CD4     %     VL
07/15/10  423     33    88k
08/28/10  489     19    189k
09/06/10-Started ATRIPLA
09/15/10  420     38    1400
11/21/10  517     25    51

Offline Hellraiser

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Re: Whats your opinion? Should I start Meds?
« Reply #23 on: July 11, 2010, 01:20:55 AM »
Thats an interesting point you mention Ann.  I was reading some article on Thebody.com where a panel of physicians discussed what they would do if they were positive.  The only one who stated he would wait until CD4 dropped a minimum threshold was British.  I wonder how much of our current "hit it hard with magic pills and assume the consequences aren't as bad as the virus" mentality is a result of culture?

I think you'll find letting the virus run rampant is a lot worse than any of the first line hiv treatments.
As for resistance issues, you will not develop resistance issues as long as you remain adherent to your meds.

Offline Ann

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Re: Whats your opinion? Should I start Meds?
« Reply #24 on: July 11, 2010, 08:34:05 AM »
I think you'll find letting the virus run rampant is a lot worse than any of the first line hiv treatments.
As for resistance issues, you will not develop resistance issues as long as you remain adherent to your meds.

My doctor's contention is that we don't know what some of these newer - and seemingly more easily tolerated - meds are going to do to us with long-term use. And remember, he's a pharmacologist. He studies what they do to our bodies as well as what they do to the virus.

I wonder how much of our current "hit it hard with magic pills and assume the consequences aren't as bad as the virus" mentality is a result of culture?

Good question and one I've often wondered about.
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"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline Boze

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Re: Whats your opinion? Should I start Meds?
« Reply #25 on: July 11, 2010, 02:36:41 PM »
My hiv doc is a highly respected and published hiv pharmacologist/researcher and he recommends waiting until you are clearly on a downward trend with your CD4s - and he's talking about the new meds.

Right - I don't see how we disagree. So as long as the patient exhibits a downward trend with CD4 - he recommends starting. Which is what 99% of people would have - unless they happen to be non-progressors or very-slow-progressors (such as yourself).

So a steady drop from 800-700-600 in his view would precipitate starting?
==========
Aug08 - Seroconversion
Mar10 - Diagnosis; cd4 690 - VL 19,000
Apr10 - cd4 600
May10 - VL 4,500
Jun10 - started Atripla ; VL 113
Jul 10 - UD vl, CD4 590
Aug 10 - UD, CD4 810, 52%
Nov 10 - UD, CD4 980

Offline Ann

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Re: Whats your opinion? Should I start Meds?
« Reply #26 on: July 12, 2010, 10:12:15 AM »


So a steady drop from 800-700-600 in his view would precipitate starting?

No, because a CD4 of 600 is not a point where he would initiate therapy. A person could have that kind of drop and level out in the 600-500 range. Or they could level out in the 350-500 range. No meds needed.

I'm generally in the 400-500 range, with occasional forays into the 300s and once or twice in the 200s. No meds needed.
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"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline Boze

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Re: Whats your opinion? Should I start Meds?
« Reply #27 on: July 12, 2010, 02:16:42 PM »
No, because a CD4 of 600 is not a point where he would initiate therapy. A person could have that kind of drop and level out in the 600-500 range. Or they could level out in the 350-500 range. No meds needed.

I'm generally in the 400-500 range, with occasional forays into the 300s and once or twice in the 200s. No meds needed.

So your doctor prescribes this method on the assumption that the patient may be an LTNP? Given that a very, very small percent of people are lntp this strikes me as a fairly dangerous strategy.
We have numerous studies demonstrating that it's better to start at 500 than 350 - but he is advocating waiting for 350 just in case cd4 count may stabilize by then?  What if (and most likely it won't) there is no stabilization? You have done large damage to your immune system and start drugs anyway.

==========
Aug08 - Seroconversion
Mar10 - Diagnosis; cd4 690 - VL 19,000
Apr10 - cd4 600
May10 - VL 4,500
Jun10 - started Atripla ; VL 113
Jul 10 - UD vl, CD4 590
Aug 10 - UD, CD4 810, 52%
Nov 10 - UD, CD4 980

Offline Nestor

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Re: Whats your opinion? Should I start Meds?
« Reply #28 on: July 13, 2010, 10:49:22 AM »
But you are (as I understand) a Long-term nonprogressor - you are able to control the virus and keep a steady CD4 count. This makes you rather unique. Unfortunately most people are not LNTP - and have to face  declining cd4 counts. This must be pretty stressful - as they know what they  will have to start HAART and are just waiting for the day.

But Ann would never have known she was going to be a LTNP or LTSP if she had listened to some doctor who wanted her to start on meds after her second set of labs.  That is what makes me angry every time I see someone with good numbers pushed into taking unnecessary meds at the very first or second set of labs--this person will never even have the chance to find out what kind of story he or she would have had without the meds.

Is it pretty stressful living without meds, "waiting for the day"?  Sure, but no more than it would be for me to be on meds, waiting for the day when something like kidney or liver damage might happen. 

Quote
We have numerous studies demonstrating that it's better to start at 500 than 350 - but he is advocating waiting for 350 just in case cd4 count may stabilize by then?  What if (and most likely it won't) there is no stabilization? You have done large damage to your immune system and start drugs anyway.

No, it isl not merely "starting drugs anyway."  It is starting drugs six or thirteen or more years later than we would have had we started "right away".  That means 1. probably starting with better meds than were available years earlier, and 2. that many years fewer of possibly contributing to organ damage etc. Needless to say, I am completely unconvinced that I have done large damage to my immune system, and the studies that purport to show that it's better to start at 500 than 350 have seemed to me extremely unconvincing. 



Summer 2004--became HIV+
Dec. 2005--found out

Date          CD4    %       VL
Jan. '06    725    25      9,097
Nov. '06    671    34     52,202
Apr. '07    553    30      24,270
Sept. '07  685    27       4,849
Jan. '08    825    29       4,749
Mar. '08    751    30     16,026
Aug. '08    653    30       3,108
Oct. '08     819    28     10,046
Jan '09      547    31     13,000
May '09     645   25        6,478
Aug. '09    688   30      19,571
Nov. '09     641    27       9,598
Feb. '10     638    27       4,480
May '10      687      9    799,000 (CMV)
July '10      600     21      31,000
Nov '10      682     24     15,000
June '11     563    23     210,000 (blasto)
July  '11      530    22      39,000
Aug '11      677     22      21,000
Sept. '12    747     15      14,000

Offline Ann

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Re: Whats your opinion? Should I start Meds?
« Reply #29 on: July 13, 2010, 11:40:48 AM »
So your doctor prescribes this method on the assumption that the patient may be an LTNP? Given that a very, very small percent of people are lntp this strikes me as a fairly dangerous strategy.
We have numerous studies demonstrating that it's better to start at 500 than 350 - but he is advocating waiting for 350 just in case cd4 count may stabilize by then?  What if (and most likely it won't) there is no stabilization? You have done large damage to your immune system and start drugs anyway.

You haven't necessarily done "large damage" to your immune system while waiting to see a trend. I know I haven't.

That is what makes me angry every time I see someone with good numbers pushed into taking unnecessary meds at the very first or second set of labs--this person will never even have the chance to find out what kind of story he or she would have had without the meds.

Yes, it makes me angry too. This trend seems to be more prevalent in the USA where big pharma gives loads of kick-back to doctors.


Is it pretty stressful living without meds, "waiting for the day"?  Sure, but no more than it would be for me to be on meds, waiting for the day when something like kidney or liver damage might happen. 

Absolutely.


No, it isl not merely "starting drugs anyway."  It is starting drugs six or thirteen or more years later than we would have had we started "right away".  That means 1. probably starting with better meds than were available years earlier, and 2. that many years fewer of possibly contributing to organ damage etc. Needless to say, I am completely unconvinced that I have done large damage to my immune system, and the studies that purport to show that it's better to start at 500 than 350 have seemed to me extremely unconvincing. 

VERY true. If I had started when first diagnosed, I would have been put on Combivir, which contains AZT, something that is rarely used today (in developed nations) because of the side-effects.

I'm also totally unconvinced that I have done much, if any, damage to my immune system.




As promised, here's my numbers history. It only goes back to 2001 because while I know for a fact that I was infected in the spring of 1997, I wasn't diagnosed until February 2001.

The date format is year/mm/dd

Where the VL appears as 00,000 it is because the VL wasn't done but I wanted to keep the columns as tidy as possible. Same goes for a VL number like 07,000 - that means 7,000

Where appropriate I have added notes.

2001-02-22 VL 80,700 CD4 490
2001-03-30 VL 21,000 CD4 997 32%  We think the CD4 here was lab error
2001-05-29 VL 43,700 CD4 440
2001-07-10 VL 43,700 CD4 350
2001-08-07 VL 25,000 CD4 480
2001-08-21 VL 00,000 CD4 660
2001-10-08 VL 91,100 CD4 470
2001-12-04 VL 96,200 CD4 620

2002-02-04 VL 21,000 CD4 620
2002-04-11 VL 00,000 CD4 530 26%  Started hep C treatment
2002-07-10 VL 00,000 CD4 460 27%
2002-09-11 VL 00,000 CD4 530 26%
2002-10-09 VL 30,300 CD4 322 31%

2003-01-08 VL 17,800 CD4 363 23%
2003-04-02 VL 06,940 CD4 410          Ended hep C treatment
2003-07-07 VL 40,700 CD4 474

2004-01-28 VL 29,900 CD4 518 28%
2004-03-?? VL 07,370 CD4 281 23%   had shingles which wasn't quite cleared
2004-06-01 VL 07,740 CD4 460 27%
2004-08-30 VL 13,000 CD4 568 26%
2004-11-23 VL 11,000 CD4 645 28%

2005-02-15 VL 03,350 CD4 532 27%
2005-03-29 VL 00,000 CD4 715 28%
2005-06-21 VL 06,580 CD4 660 26%
2005-08-02 VL 00,000 CD4 732 28%
2005-10-12 VL 00,000 CD4 320 25%  minor op previous day
2005-11-08 VL 10,200 CD4 786 28%

2006-01-31 VL 12,500 CD4 787 32%
2006-04-25 VL 11,800 CD4 628 29%
2006-07-18 VL 18,400 CD4 550 26%
2006-10-17 VL 14,500 CD4 447 26%

2007-01-16 VL 12,600 CD4 567 26%
2007-04-10 VL 07,610 CD4 441 26%
2007-07-03 VL 05,630 CD4 411 25%
2007-09-25 VL 16,700 CD4 525 27%
2007-12-18 VL 12,900 CD4 299 22%

2008-02-05 VL 13,700 CD4 489 19%
2008-04-29 VL 10,700 CD4 433 26%
2008-07-22 VL 10,200 CD4 314 27%
2008-11-04 VL 03,050 CD4 470 29%

2009-01-27 VL 06,700 CD4 459 25%
2009-04-21 VL 07,390 CD4 399 25%
2009-07-21 VL 35,000 CD4 561 32% New VL assay used
2009-11-03 VL 39,900 CD4 576 26%

2010-02-09 VL 00,000 CD4 392 29%
2010-05-18 VL 20,500 CD4 368 26%
2010-10-12 VL 08,000 CD4 576 28%

2011-01-18 VL 27,500 CD4 332 20%
2011-04-20 VL 38,700 CD4 581 28%


PS - Last summer my clinic started using a different VL assay than they had previously. Doc says it is better at detecting my clade of virus and I should not be alarmed or concerned about the apparent rise. My clade is from Africa and as we have many African clients at my clinic, they switched to this new assay. I don't know exactly what assay it is, so don't ask. :)


edited to add latest lab results due to thread being linked to in a current thread
« Last Edit: September 16, 2011, 01:58:08 PM by Ann »
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"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline wtfimpoz

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Re: Whats your opinion? Should I start Meds?
« Reply #30 on: July 13, 2010, 12:39:44 PM »
I think you'll find letting the virus run rampant is a lot worse than any of the first line hiv treatments.
As for resistance issues, you will not develop resistance issues as long as you remain adherent to your meds.

no one is suggesting letting it "run rampant".  I think we all agree that drugs should be started at some point. The idea of putting someone on toxic, expensive drugs...when that person doesn't need them...isn't too brilliant either.  Ann makes her point FAR more concisely than I could have.  If she'd been thrown on meds right at the outset, she would have experienced ALL the side effects of the worst bouts of drugs that were out there.  As for "resistance issues not arising as long as you remain adherent"...we're all human...we all err.  Stuff doesn't always turn out as we plan, no matter who we think we are.  Not everything is within our control.  The odds don't always land in our favor.  If HIV teaches us nothing else, it should teach us this.  The longer the period of time one is on drugs, the greter the liklihood of a screwup that compromises the adherence that the meds require.  This holds true matter how adherent you think you're going to be at the outset. 

And where does the money for these drugs come from?  There are so many horror stories on here of people who've been bankrupted by the cost of the disease, it seems absurd to commit oneself to the cost of treatment until one is reasonably certain they can commit to the cost of the treatment as well as the side effects and the routine.  If you're stuck in a shithole like the United States, this is a major issue to contend with. 

Finally, I'd like to suggest that the rush for meds is as much a psychological crutch as it is a manifestation of culture.  When I was diagnosed, I wanted drugs.  I wanted to retake some feeling of control.  This is a sensation exploited by big pharma.  We've all seen that banner ad that says "HIV treatment is POWER", right?  Clearly, they're playing to this.  And to an extent, thinking of the meds as self empowerment is one of the healthiest advertising campaigns I can think of.  God knows we need motivation greater than staving off death as a reason to commit to the things.  Still, I think we need to understand...on a gut level...that the drugs don't cure HIV.  They don't make you completely noninfectious, and anyone who gets your strain is gonna have an even harder time finding treatment.  They don't make the shame go away, the don't make the embarassment go away.   The science behind their long term effects is ambiguous at best, and in field where treatment guidelines seem to change predictably every five years, ambiguity is hardly reassuring.       
09/01/2009-neg
mid april, 2010, "flu like illness".
06/01/2010-weakly reactive ELISA, indeterminant WB
06/06/2010-reactive ELISA, confirmed positive.

DATE       CD4     %     VL
07/15/10  423     33    88k
08/28/10  489     19    189k
09/06/10-Started ATRIPLA
09/15/10  420     38    1400
11/21/10  517     25    51

Offline Ann

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Re: Whats your opinion? Should I start Meds?
« Reply #31 on: July 13, 2010, 01:03:01 PM »

Finally, I'd like to suggest that the rush for meds is as much a psychological crutch as it is a manifestation of culture.  When I was diagnosed, I wanted drugs.  I wanted to retake some feeling of control.     

Me too. When I was just a few weeks into my diagnosis, I told my doctor I wanted to do  something about the virus. He patiently sat and discussed the pros and cons with me for over a half-hour and by the end of the discussion I was in agreement with him that I didn't need to start just yet. I'm so glad he talked me down from that ledge - I've had many med-free, healthy years as a result. 

In 2001, the medical profession had only recently backed down from their "hit hard, hit early" approach and he was one of the ones who had actively advocated for this change in protocol. The guy knows what he's talking about when it comes to meds and treatment, after all, he's a much published hiv pharmacologist. (just google "Saye Khoo" hiv)
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"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline metekrop

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Re: Whats your opinion? Should I start Meds?
« Reply #32 on: July 13, 2010, 01:38:52 PM »
I've been med free for thirteen years and I don't worry about it.


I don't trust you.  Are you sure you didn't have any heath problem, hospitalization or the same and were not on meds since thirteen years of your diagnosis.   ::)
Diag on Dec 8, 2000, CD 440 VL 44K, No Meds
Dec/08 - Feb/09 CD< 50 & VL >500k hosp'z.
St. Atripla - July/09 CD 179, VL 197k
Oct/09 CD 300 VL UD Chol 267
Mar/10 CD 468 UD, Ch 220
Aug/10 CD 460 UD, Ch 195
Dec/10 CD 492 UD, Ch 172
Mar/11 CD 636 UD, Ch 201
Aug/11 CD 530 UD, Ch 98
Jan/12 cd 616 UD, ch 189
Jul/12 CD 640 UD, Ch ?
Dec/12 CD 669 Ud, Ch 125
May/7 CD711 Ud, Ch?
Nov/ 22 663 UD, Ch,
April 17 CD 797,
Oct, 14 CD 810 UD

Offline Ann

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Re: Whats your opinion? Should I start Meds?
« Reply #33 on: July 13, 2010, 01:58:29 PM »

I don't trust you.  Are you sure you didn't have any heath problem, hospitalization or the same and were not on meds since thirteen years of your diagnosis.   ::)

Why would I lie? I put any relevant extraneous medical goings-on in the notes next to my numbers. Aside from Acyclovir and codeine the only meds I've taken since diagnosis (or before, for that matter) are pegylated interferon and ribavirin for hep C duing 2002/03, as I noted above. My hep C was successfully cleared and I no longer have hep C.

I take Acyclovir prophylaxis for herpes - and my herpes pre-dates my hiv by nearly 20 years. I'd likely be on Acyclovir regardless of my hiv status.

I take codeine to control my hiv-related diarrhea - diarrhea that in my doctor's experience, only has a 50/50% chance of clearing up if I were to take ARVs. Also in his experience, many of his patients who experienced hiv-related diarrhea before taking meds were more likely to have their diarrhea get WORSE after starting meds. I pop a few milligrams of codeine each day and have normal bowel movements. I take regular breaks from it so my tolerance levels do not rise, which is the only long-term side-effect to taking opiate-based pain killers.

I've had thrush a couple times after taking antibiotics for NON HIV RELATED infections - in other words, they were infections that anyone can get and had nothing to do with my hiv status. I'm healthier than many hiv negative women of my age (47) that I know.

But if you want to believe that I'm purposely mis-leading people - to what end you imagine, I haven't a clue - then you go right ahead. ::) indeed.

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"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline Boze

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Re: Whats your opinion? Should I start Meds?
« Reply #34 on: July 13, 2010, 03:56:35 PM »
Ann & Nestor,

Would either of you have statistics on what percent of HIV+ individuals are LTNP (or very slow progressors)  as you appear to be? From talking to people on these boards I reckon the % is very, very small.  Therefore your saying "I've been meds-free for many years and I'm just fine" is akin to the lottery winner advocating playing the lottery because he hit the jackpot.

There is absolutely clear scientific evidence that delaying start of treatment to 350 vs 500 has significant impact on subsequent mortality. Whether one likes this result or finds it unconvincing is irrelevant - the numbers are real:

"From 1996 to 2006, the research team examined 8,374 HIV-infected study participants with CD4+ T-cell counts of 351-500 cells/mm3 who had never taken antiretroviral treatment and were free of AIDS-related illnesses. Thirty percent (2,473) of the study participants began taking HAART, while the remaining 70 percent (5,901) of participants deferred treatment until their CD4+ T-cell counts fell below 350 cells/mm3. The researchers found a 71 percent higher risk of death for patients who deferred treatment rather than initiating HAART, suggesting that therapy should begin at an earlier stage of HIV disease than currently recommended. A randomized clinical trial will be necessary to confirm this finding and support changes to established treatment guidelines."

http://www.sciencedaily.com/releases/2008/10/081027101353.htm

It all comes down to probabilities. If one thinks he has a 20-30% chance of being an LNTP - then maybe it makes sense to wait. But since that % is much, much smaller, I think delaying treatment while hoping to find that your CD4 magicaly bounce from 350 to 600 is naive.

Still, I think we need to understand...on a gut level...that the drugs don't cure HIV.  They don't make you completely noninfectious, and anyone who gets your strain is gonna have an even harder time finding treatment.  They don't make the shame go away, the don't make the embarassment go away.   The science behind their long term effects is ambiguous at best, and in field where treatment guidelines seem to change predictably every five years, ambiguity is hardly reassuring.       

Only for the sake of the newbies reading this thread, I'd like to point out that pretty much every sentence in this quote is nonsense. It's probably well-meaning nonsense, but so nonetheless.

1) Drugs prevent HIV virus from spreading and doing its damage to the body. They don't *cure* it because there are certain places where HIV hides but as far as I understand it's not doing much damage there (at least science has no clear answers on this now). At least people on drugs live while those without die.
2) They make you almost completely non-infectious. Someone who is UD has extremely small chance of transmitting, borderline 0.
3) I certainly feel much better psychologically knowing that I am UD and I can't accidentally transmit. Don't have to worry about your blood touching someone - something I experienced while not UD.
4) Guidelines are changing because the drugs toxicity is IMPROVING. This is a crucial point that you get 100% wrong. The recommendation to start early is spreading BECAUSE the drugs are much better tolerated. It's not a sign of doctors being all ambivalent and flip-flopping.
5) Your argument about someone getting a resistant strain from a person who failed treatment is also pretty dubious. Most people don't develop resistance and are not infectious. So instead of considering the 99% probability of NOT TRANSMITTING because one is UD,  you are considering the 1% probability of someone passing their resistance strain.

I think you made a good point regarding cost - that would be my prime reason to delay treatment. You don't want to start and then find out 1 year later that you don't have the means to buy it (even though generic Atripla is now $150 a month). All other arguments against starting early - imho - don't stack up.
==========
Aug08 - Seroconversion
Mar10 - Diagnosis; cd4 690 - VL 19,000
Apr10 - cd4 600
May10 - VL 4,500
Jun10 - started Atripla ; VL 113
Jul 10 - UD vl, CD4 590
Aug 10 - UD, CD4 810, 52%
Nov 10 - UD, CD4 980

Offline Ann

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Re: Whats your opinion? Should I start Meds?
« Reply #35 on: July 13, 2010, 04:20:36 PM »
From talking to people on these boards I reckon the % is very, very small.  Therefore your saying "I've been meds-free for many years and I'm just fine" is akin to the lottery winner advocating playing the lottery because he hit the jackpot.


NOOOOOO!!!!!!

You just aren't getting it, are you? ~bangs head on desk~

What I'm saying and what I think Nestor is also saying is this - if a person is put on meds straight-away after only a very few test results or after just one single result under (or in) the 500 to 350 range, then they will never, ever have the chance to find out if they might have been a LTNP or LTSP.

Nobody is advocating waiting until your numbers are dire. Also, no one is advocating not starting if you are having bothersome or debilitating symptoms.

We're just saying that if more people had a little more patience and waited to see what sort of trend they had OVER TIME, then the percentages of people turning out to be LTNP or LTSP could very well go up.

The key to this approach is regular and consistent monitoring.

For example, I went back through Metekrop's posting history. (He's the guy who accused me of lying.) I discovered that he was diagnosed in 2000 with a VL of 20,000 and CD4 of 440. He didn't need meds at that point.

However, he decided to jump on the denialist bandwagon (he was a fan of Christina Maggiore) and ignored his virus until it landed him in hospital for five months in 2009. If he had been monitoring his virus during those nine years, maybe he would have had say, three or four more med-free years before starting when his numbers showed the need. If he'd done that, he never would have ended up so sick and with less than 50 CD4s. 

He and his doctor reckoned he'd been poz for about ten years at diagnosis, so he could also conceivably had thirteen to fourteen med free years too before his numbers showed the need to start meds.

As you can see from my results, I have always been regularly monitored since diagnosis. I wouldn't dream of going more than three months, never mind nine years, without having labs done. I have no intention of letting my numbers go too far south and I will start meds when my numbers show the need just as I recommend anyone else does.

Do you get it yet, Borze?
« Last Edit: July 13, 2010, 04:24:09 PM by Ann »
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"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline newt

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Re: Whats your opinion? Should I start Meds?
« Reply #36 on: July 13, 2010, 04:37:15 PM »
Quote
There is absolutely clear scientific evidence that delaying start of treatment to 350 vs 500 has significant impact on subsequent mortality. Whether one likes this result or finds it unconvincing is irrelevant - the numbers are real

Well no, you quote the refutation yourself further down:

Quote
A randomized clinical trial will be necessary to confirm this finding and support changes to established treatment guidelines.

Nonetheless, in the US they went ahead and changed the guidelines to treat at 350-500. In Europe we stuck to treat at 350. The study to look at treatment at 500 v 350 is enrolling, it's important, is called START

START study
http://insight.ccbr.umn.edu/start/

Community statement on START
http://i-base.info/home/community-statement-supporting-start-trial/

- matt


"The object is to be a well patient, not a good patient"

Offline Boze

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Re: Whats your opinion? Should I start Meds?
« Reply #37 on: July 13, 2010, 04:43:12 PM »
NOOOOOO!!!!!!

You just aren't getting it, are you? ~bangs head on desk~

What I'm saying and what I think Nestor is also saying is this - if a person is put on meds straight-away after only a very few test results or after just one single result under (or in) the 500 to 350 range, then they will never, ever have the chance to find out if they might have been a LTNP or LTSP.


As you can see from my results, I have always been regularly monitored since diagnosis. I wouldn't dream of going more than three months, never mind nine years, without having labs done. I have no intention of letting my numbers go too far south and I will start meds when my numbers show the need just as I recommend anyone else does.

Do you get it yet, Borze?

Yes - I totally get your point. I am completely not accusing you of waiting until it's too late. But we have a disagreement that I'll try to lay out in detail:

1) I think that % of people who are LTNP / LTSP is maybe 5% at most. Studies estimate anywhere from 1-2% to 5-15% based on cohort (http://www.aidstruth.org/denialism/myths/ltnp)

2) The only way to tell if you are LTNP-LTSP is to actually let your cd4 count drop to the level (ie 350) that's proven to be more dangerous than an earlier start and confirming that your cd4's don't bounce.

3) For 95% of people this represents putting their immune system under undue risk since they will have to start anyways. For 5% of people this presents a chance to avoid starting HAART because their CD4 bounce. It's also unclear whether the LTNP whose cd4 dropped to 350 experiences permanent damage.

So the reason most doctors don't advocate this approach is that 5% of people who don't get to find out their LTNP status are greatly outweighed by the 95% who don't let HIV damage their system.
==========
Aug08 - Seroconversion
Mar10 - Diagnosis; cd4 690 - VL 19,000
Apr10 - cd4 600
May10 - VL 4,500
Jun10 - started Atripla ; VL 113
Jul 10 - UD vl, CD4 590
Aug 10 - UD, CD4 810, 52%
Nov 10 - UD, CD4 980

Offline newt

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Re: Whats your opinion? Should I start Meds?
« Reply #38 on: July 13, 2010, 04:49:19 PM »
To return to the OP, my choice would be no.

I would wait til 2 results under CD4 count 500, or maybe 3-4 regardless of count showing a downward trend.

But certainly no more than 1-2 tests CD4 count below 350  (or 400 if I was cautious) regardless.

However, it's your choice, if you are ready to start, start, if you want to wait, wait.

- matt
"The object is to be a well patient, not a good patient"

Offline mecch

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Re: Whats your opinion? Should I start Meds?
« Reply #39 on: July 13, 2010, 05:38:57 PM »
Yes - I totally get your point. I am completely not accusing you of waiting until it's too late. But we have a disagreement that I'll try to lay out in detail:


Boze you really are rather new to all this and I for one feel you are going overboard working out your readings - which are no doubt helping you to cope - by trying to give such detailed advice about HIV to others. Why don't you just share more about yourself and your life and take on things that aren't so medically technical - and let the HIV knowledge digest a bit more with experience?
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline Ann

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Re: Whats your opinion? Should I start Meds?
« Reply #40 on: July 13, 2010, 05:44:18 PM »
1) I think that % of people who are LTNP / LTSP is maybe 5% at most. Studies estimate anywhere from 1-2% to 5-15% based on cohort (http://www.aidstruth.org/denialism/myths/ltnp)


You can't lump LTNP and LTSP into one group and lay some stats on them as a whole. There are several tiers to this group of people, ranging from elite controllers to LTSP. It's like a pyramid, with the elite controllers at the top and a wider base of LTSP at the bottom. There are many more LTSP out there than you might imagine and some of our LTS are amongst them. They are on meds now, but went for years without.

I agree that there aren't that many LTNP, but LTSP are another story.

If you want to know more about elite controllers etc, go to http://www.zephyrfoundation.org/

2) The only way to tell if you are LTNP-LTSP is to actually let your cd4 count drop to the level (ie 350) that's proven to be more dangerous than an earlier start and confirming that your cd4's don't bounce.


It hasn't been conclusively proven as Newt pointed out with one of your very own quotes. I know plenty of people who, under the previous guidelines, waited until their counts were in the 200s before starting and they're just fine.

3) For 95% of people this represents putting their immune system under undue risk since they will have to start anyways. For 5% of people this presents a chance to avoid starting HAART because their CD4 bounce. It's also unclear whether the LTNP whose cd4 dropped to 350 experiences permanent damage.

So the reason most doctors don't advocate this approach is that 5% of people who don't get to find out their LTNP status are greatly outweighed by the 95% who don't let HIV damage their system.


Once again, you're lumping LTNP and LTSP together. I will have to start meds one day while a LTNP might not.

And of course you're totally forgetting the risks of long-term ARV use - just like waiting until 350 to start meds, it's really an unknown quantity.

To return to the OP, my choice would be no.

I would wait til 2 results under CD4 count 500, or maybe 3-4 regardless of count showing a downward trend.

But certainly no more than 1-2 tests CD4 count below 350  (or 400 if I was cautious) regardless.

However, it's your choice, if you are ready to start, start, if you want to wait, wait.

- matt


I sorta agree with Matt. Certainly on the no more than two results (in a row) below 350. I've been at 350 once and under 350 a total of five times. In all cases my next result was good.

Of those five times, once was during hep C treatment, which is known to lower CD4 levels (but not permanently). Once was when I had shingles, once was the day after a minor operation and once was while I was going through an exceedingly stressful time. A year after having a count of 281, 23% because of shingles, I had a count of 715, 28%. The day after my operation my counts were 320, 25% and a mere four weeks later they were 786, 28%.

And this is precisely why I do not advocate hitting the panic button because of one measly result.

And between 350 and 500, I would want to see a clear and persistent downward trend. I've bounced around in the 400-500 range too long to not want to see a clear trend.

If someone is having a clear and persistent downward trend while in the 350-500 range while also having a decrease in percentage - and especially accompanied by a rising VL - then I would certainly recommend starting as I would myself.

And as Newt points out, it is up to the OP what he wants to do. I just want to make it clear that starting above 350 just isn't mandatory and some people can and do lead healthy lives while in the 350-500 (and above) range with no apparent ill-effects. Some do, some don't, just as some on meds have no side-effects and others do.

The difference between my approach and the approach of someone who starts meds when it isn't strictly necessary is that I can always start meds, but once they start, they can't stop. I've got my options open, they don't.

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"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline phildinftlaudy

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Re: Whats your opinion? Should I start Meds?
« Reply #41 on: July 13, 2010, 06:02:13 PM »

The difference between my approach and the approach of someone who starts meds when it isn't strictly necessary is that I can always start meds, but once they start, they can't stop. I've got my options open, they don't.

I agree Ann---- I started meds immediately when my levels dipped below 500 (473).  Looking back (in hindsight), I wish I would have waited to see if there was more of a downward trend; especially, since my viral load had actually fallen when my CD4s fell to 473.  But, since I made the choice to go on meds, I now have to live with it without knowing if I might have rebounded from the 473.  I wish I would have waited one or two more lab results to see the trend before I would have started.  Just my experience and opinion.
September 13, 2008 - diagnosed +
Labs:
Date    CD4    %   VL     Date  CD4  %   VL
10/08  636    35  510   9/09 473  38 2900  12/4/09 Atripla
12/09  540    30    60   
12/10  740    41  <48   
8/11    667    36  <20  
03/12  1,041  42  <20
05/12  1,241  47  <20
08/12   780    37  <20
11/12   549    35  <20
02/12  1,102  42  <20
11/12   549    35  <20

Offline Hellraiser

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Re: Whats your opinion? Should I start Meds?
« Reply #42 on: July 13, 2010, 07:25:35 PM »
As an aside about inflammation, is it controlled if the virus is controlled or is it still raging because your body is aware that the infection is still on?

Offline Miss Philicia

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Re: Whats your opinion? Should I start Meds?
« Reply #43 on: July 13, 2010, 09:03:05 PM »
As an aside about inflammation, is it controlled if the virus is controlled or is it still raging because your body is aware that the infection is still on?

At least as far as cardiovascular disease goes, it looks like it's dependent on cd4's getting high enough.

http://www.aidsmap.com/en/news/04A388FC-A241-43ED-B476-05FEEAEF98AC.asp
"I’ve slept with enough men to know that I’m not gay"

Offline newt

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Re: Whats your opinion? Should I start Meds?
« Reply #44 on: July 14, 2010, 04:47:58 AM »
Hmmm

It helps if reports look at the confidence intervals, and the power of the study.

While this is a suggestive study, if you look at the full data on the NATAP report (http://www.natap.org/2010/HIV/071210_03.htm) the degrees of confidence are in many cases wide, and in many cases return a value less than 1 compared to reference values (ie risk compared to CD4 count >500). Case control studies are difficult for things like cardiovascular risk, because they tend, like this one, to be somewhat underpowered. So all you get is suggestive/confusing data.

It still stands that age over 42, male sex, smoking and family history are much greater risks than CD4 count between 350 and 500.

In any case, high risk of cardiovascular disease is already an indication to consider starting treatment regardless of CD4 count in guidelines. Everyone should have their CV risk score done once a year, on meds or no.

- matt
"The object is to be a well patient, not a good patient"

Offline metekrop

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Re: Whats your opinion? Should I start Meds?
« Reply #45 on: July 14, 2010, 07:07:22 AM »
Thank you Anna for your explanation.  I don't mean that you tell a lie.  But your whole experience is well beyond my knowledge and many stories I know.  Hep c,Herps being without med in addition to your pos status is such an amazing story for me. 
Diag on Dec 8, 2000, CD 440 VL 44K, No Meds
Dec/08 - Feb/09 CD< 50 & VL >500k hosp'z.
St. Atripla - July/09 CD 179, VL 197k
Oct/09 CD 300 VL UD Chol 267
Mar/10 CD 468 UD, Ch 220
Aug/10 CD 460 UD, Ch 195
Dec/10 CD 492 UD, Ch 172
Mar/11 CD 636 UD, Ch 201
Aug/11 CD 530 UD, Ch 98
Jan/12 cd 616 UD, ch 189
Jul/12 CD 640 UD, Ch ?
Dec/12 CD 669 Ud, Ch 125
May/7 CD711 Ud, Ch?
Nov/ 22 663 UD, Ch,
April 17 CD 797,
Oct, 14 CD 810 UD

Offline Ann

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Re: Whats your opinion? Should I start Meds?
« Reply #46 on: July 14, 2010, 10:18:44 AM »
Thank you Anna for your explanation.  I don't mean that you tell a lie.  But your whole experience is well beyond my knowledge and many stories I know.  Hep c,Herps being without med in addition to your pos status is such an amazing story for me. 

OK, maybe it's a language barrier situation, but I really did think you were accusing me of lying. Thanks for the explanation.


I've had health problems that were due to hep C and also the treatment for hep C, but not so much for hiv. The hiv-related diarrhea is about the only hiv-related problem I have and is well controlled with codeine. As I stated before, going on ARVs is not guaranteed to resolve this problem for me.

From what I understand, hiv-related diarrhea is thought to have something to do with the fact that our intestinal system is wrapped up in a mesh of blood and lymph vessels. Hiv hides out in lymph tissue and they think there is a connection.

They don't really seem to know much about the mechanics of this phenomenon (the related diarrhea). It's not something that affects very many people with hiv - at least not to the extent it does me. My doc told me that as ARVs don't seem to be able to reach the hiv in lymph tissue, he thinks this is why hiv-related diarrhea as severe as mine isn't always controlled by the meds.

All I know is what happens to me - for whatever reason, my digestive system works at the speed of light. Anything I eat rushes through me, causing very painful cramping and what I call the "river-water shits" because what comes out of me looks like what you see in a river after a heavy rain. Brown water with bits floating in it. (sorry if that's TMI for anyone)

Codeine has the effect of slowing the digestive system down (this is why most people become constipated when using opiate-based pain-killers) so my body can absorb the water and nutrients. It works for me.

During 2008 I was thinking my time had come to start meds (see my numbers above) and I researched the available meds and decided on a first-line combo - Reyataz, Norvir and Truvada. However, as my VL remained low, my doctor and I decided to wait and my CD4s went back up into the 500s in the summer of 2009.

At my last appointment, I received my results from three months previous and was disappointed that my CD4s had gone back to the 400s (399, but I'm not going to split hairs over one point) and my percent was at 29%, so I'm still happy enough with that.

My doctor is also happy - he says I'm stable - and wanted me to go six months between labs instead of three, but we compromised on four. However, I'm not happy with that and will go back to three months when I schedule my next appointment at my appointment in September. I know my med-free days aren't going to last forever.

I've seen it with quite a few people who were LTSP - when the numbers go south in one of us, they tend to do so fairly quickly. I want to keep on top of my labs so I don't suddenly end up with an AIDS diagnosis.

My main concern with meds is my ability to remain adherent to a twice-daily dosing - I'm absolute crap at taking any med more than once a day. This is why I have chosen Reyataz/Norvir/Truvada. However, with my history of dire-rear, I'm a bit wary of the Norvir. I'm hoping that I will be able to wait for either once-daily raltegravir, or the new combo in the pipeline - elvitegravir boosted with cobicistat (both in phase II trials in treatment-naive patients) with Truvada.
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"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline Boze

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Re: Whats your opinion? Should I start Meds?
« Reply #47 on: July 14, 2010, 03:15:11 PM »
Boze you really are rather new to all this and I for one feel you are going overboard working out your readings - which are no doubt helping you to cope - by trying to give such detailed advice about HIV to others. Why don't you just share more about yourself and your life and take on things that aren't so medically technical - and let the HIV knowledge digest a bit more with experience?

That's a fair observation. I just feel that I did my own research and can benefit someone in a similar position facing a similar quandary. If I'm not talking about the medical stuff, I'm probably offending more liberal-minded members with my reactionary (vis-a-vis the average of forum members) views on general issues :)

I also don't really have any views of my own to speak of. I merely channel views held by top doctors in the field + research papers published. So i'm acting more of a research assistant working for free :)

==========
Aug08 - Seroconversion
Mar10 - Diagnosis; cd4 690 - VL 19,000
Apr10 - cd4 600
May10 - VL 4,500
Jun10 - started Atripla ; VL 113
Jul 10 - UD vl, CD4 590
Aug 10 - UD, CD4 810, 52%
Nov 10 - UD, CD4 980

Offline wtfimpoz

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Re: Whats your opinion? Should I start Meds?
« Reply #48 on: July 14, 2010, 11:12:52 PM »
Ann & Nestor,

Would either of you have statistics on what percent of HIV+ individuals are LTNP (or very slow progressors)  as you appear to be? From talking to people on these boards I reckon the % is very, very small.  Therefore your saying "I've been meds-free for many years and I'm just fine" is akin to the lottery winner advocating playing the lottery because he hit the jackpot.

There is absolutely clear scientific evidence that delaying start of treatment to 350 vs 500 has significant impact on subsequent mortality. Whether one likes this result or finds it unconvincing is irrelevant - the numbers are real:

"From 1996 to 2006, the research team examined 8,374 HIV-infected study participants with CD4+ T-cell counts of 351-500 cells/mm3 who had never taken antiretroviral treatment and were free of AIDS-related illnesses. Thirty percent (2,473) of the study participants began taking HAART, while the remaining 70 percent (5,901) of participants deferred treatment until their CD4+ T-cell counts fell below 350 cells/mm3. The researchers found a 71 percent higher risk of death for patients who deferred treatment rather than initiating HAART, suggesting that therapy should begin at an earlier stage of HIV disease than currently recommended. A randomized clinical trial will be necessary to confirm this finding and support changes to established treatment guidelines."

http://www.sciencedaily.com/releases/2008/10/081027101353.htm

It all comes down to probabilities. If one thinks he has a 20-30% chance of being an LNTP - then maybe it makes sense to wait. But since that % is much, much smaller, I think delaying treatment while hoping to find that your CD4 magicaly bounce from 350 to 600 is naive.

Only for the sake of the newbies reading this thread, I'd like to point out that pretty much every sentence in this quote is nonsense. It's probably well-meaning nonsense, but so nonetheless.

1) Drugs prevent HIV virus from spreading and doing its damage to the body. They don't *cure* it because there are certain places where HIV hides but as far as I understand it's not doing much damage there (at least science has no clear answers on this now). At least people on drugs live while those without die.
2) They make you almost completely non-infectious. Someone who is UD has extremely small chance of transmitting, borderline 0.
3) I certainly feel much better psychologically knowing that I am UD and I can't accidentally transmit. Don't have to worry about your blood touching someone - something I experienced while not UD.
4) Guidelines are changing because the drugs toxicity is IMPROVING. This is a crucial point that you get 100% wrong. The recommendation to start early is spreading BECAUSE the drugs are much better tolerated. It's not a sign of doctors being all ambivalent and flip-flopping.
5) Your argument about someone getting a resistant strain from a person who failed treatment is also pretty dubious. Most people don't develop resistance and are not infectious. So instead of considering the 99% probability of NOT TRANSMITTING because one is UD,  you are considering the 1% probability of someone passing their resistance strain.

I think you made a good point regarding cost - that would be my prime reason to delay treatment. You don't want to start and then find out 1 year later that you don't have the means to buy it (even though generic Atripla is now $150 a month). All other arguments against starting early - imho - don't stack up.

1)  The virus "hides" in certain places where it "doesn't do much damage"?  You mean it "hides" in places like the brain?  Google HIV cognitive decline buddy.  Better yet, enter "brain fog" into the searchengine on the right.  Our problems aren't going away with a handful of pills and some lucky insurance reform.

2)  There are some studies that claim they make you "completely non-infectious", there are some that give other figures...i think like 92% less infectious.  When I'm making decisions about the lives of those I love, I defer to the conservative estimate, especially since its been my experience that other realms of "negotiated risk" involve more risk than negotiation.  You're still infectious with the latter option, and if you screw someone enough times, their chances of avoiding the disease go to zero no matter what. 

3)  This is perhaps the most bizarre comment I have ever...EVER..witnessed on this forum.  Just for record, I don't ever worry about my blood infecting ANYONE.  Why?  I just don't leave puddles of it lying around.  Further, the disease loses its ability to infect VERY quickly after it leaves thebody.  This is probably the clearest example of someone using the drugs as a psychological crutch I can think of.  As an aside, how many people with, say, Hep. c worry about their blood?  Obviously,they shouldn't, but HCV remains infectious much longer than HIV outside the body.  The fact that your mind went in this direction says more about how the disease makes you feel about yourself than  anything else.

4)  Our CURRENT PROJECTIONS of their long term toxicity is changing.  This is far from a gaurantee that the current roundup of drugs isn't toxic in the long term.  It took the last generation of drugs a few years for some of the unexpected side effects to flare up.  Maybe it'll take this round a full decade?  We don't know.  Trust me, your doctor doesn't really know either.  If he or she is good, they'll admit this.   

5)  Most people don't develop resistance?  I'd love to hear a few of the long term survivors chime in on this one.  I know its a WHOLE lot easier to make do with 1 or 3 three drugs than the regimes they were on, but mistakes will still happen...inevitabyly...to all of us.  Those mistakes lead to resistance.  15% of new infections already carry some form of resistance, and current projections are for this number to skyrocket in the next five years.  This isn't because resistance doesn't happen.   

Finally, I get a kick out of your dismissive claim that long term treatment is easily sustainable because "you can get $150 generic atripla over the internet".  Personally, I don't feel safe buying furniture from domestic stores over the internet.  I'm not sure that I want to put my faith in "cheapgenericcanadiandrugs.com".  Many of these sites don't even seem able to create a visually pleasant website.  This makes me question whether they're really capable of navigating the complexities of international pharmaceutical sales.  Are you getting REAL viraday from reputable cipla when yoou visit "foreigndrugaltnernatives.com", or are you getting M&M's?  Or birth control pills?  Or a reconstituted tenofvir tab which will do nothing but make you resistant to your own regime?  There are people on this very forum who are being crushed by the immense costs of paying for their regime.  If its so freaking easy, why don't they just buy these cheap foreign drugs for a fraction of their monthly private insurance premium?  I'm guessing its because its NOT REALLY THAT EASY.  Besides that, my understanding is that CIPLA is limited in its ability to produce generics in the long term.  Thats assuming you can continuously slip your supply of the stuff past inernetioanl customs for decades.  If someone has a reasonable way to get RELIABLE foreign generics into their possession, PLEASE EMAIL ME, I'm trying to formulate a plan b.   
09/01/2009-neg
mid april, 2010, "flu like illness".
06/01/2010-weakly reactive ELISA, indeterminant WB
06/06/2010-reactive ELISA, confirmed positive.

DATE       CD4     %     VL
07/15/10  423     33    88k
08/28/10  489     19    189k
09/06/10-Started ATRIPLA
09/15/10  420     38    1400
11/21/10  517     25    51

Offline Miss Philicia

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Re: Whats your opinion? Should I start Meds?
« Reply #49 on: July 15, 2010, 12:47:02 PM »

5)  Most people don't develop resistance?  I'd love to hear a few of the long term survivors chime in on this one. 

Fine, I'm a long term survivor of 22 years.  You clearly don't comprehend the difference between pre-HAART treatment and post-HAART treatment.  Research this, comprehend the difference, and if you have further questions feel free to ask.
"I’ve slept with enough men to know that I’m not gay"

Offline Boze

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Re: Whats your opinion? Should I start Meds?
« Reply #50 on: July 15, 2010, 02:26:29 PM »
1) We don't know what's causing cognitive decline for HIV+ who are on ARV. This study: http://www.aidsmeds.com/articles/hiv_brain_cns_1667_16868.shtml

showed that decline does not correlate with how effective the ARV treatment is at crossing the brain barrier. This is just a very grey area. Could be result of overall inflammation.

2) You need to actually read the study rather than the headline. Were you to do so, you would see that out of 103 discordant couples on ARV in the study, only one transmitted. And we don't know whether that individual was UD since he recently started treatment.
I'll put it to you this way - there is no recorded instance of a UD individual transmitting. Millions of people are on ARV - so were this to happen, we'd hear about it.

3) Use your imagination - sometimes people use needles / lancets that have blood and other people may accidentally touch them after. Hint - home diabetes test.

4) Can you find me one example of a drug that was used for 10 years and then all of a sudden found to be very toxic? I don't mean 10-20 people having a heart attack out of millions (ie Viox) using it. I mean real % toxic that only shows up after 15 years of use.
I'm not saying you are wrong - I don't know this. It just seems that if people are using Atripla for 10 years with no problem - how likely are we to find that using it for 20 years will be very bad?

5) To add to Mis P. Please see details of foto study. There people were using Atripla (i think) for 5 days, off for 2 days for 6 months. Nobody developed resistance. Ie you think to have a skewed understanding of how much dosage one must miss in order to develop resistance.

6) I looked into this in this thread: http://forums.poz.com/index.php?topic=33218.0

(I am very thorough :) Ann has pointed out that it's ok to buy online. I didn't get around to testing the pill vs Atripla - would do so if I lose my current supply. But if you want to check - get in touch with the lab I found and see how costly the test would be.
==========
Aug08 - Seroconversion
Mar10 - Diagnosis; cd4 690 - VL 19,000
Apr10 - cd4 600
May10 - VL 4,500
Jun10 - started Atripla ; VL 113
Jul 10 - UD vl, CD4 590
Aug 10 - UD, CD4 810, 52%
Nov 10 - UD, CD4 980

Offline Ann

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Re: Whats your opinion? Should I start Meds?
« Reply #51 on: July 15, 2010, 02:34:55 PM »

I'll put it to you this way - there is no recorded instance of a UD individual transmitting. Millions of people are on ARV - so were this to happen, we'd hear about it.

And I'll put it this way, you're wrong.

Case report of sexual transmission when viral load suppressed to <50 copies/mL

That was from October '08 and there are bound to have been other cases since.

You're thinking of the Swiss statement - but that involved heterosexual couples and it was looking at the risks of conceiving naturally and so was more about vaginal intercourse rather than anal.
Condoms are a girl's best friend

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"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline Boze

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Re: Whats your opinion? Should I start Meds?
« Reply #52 on: July 15, 2010, 02:42:06 PM »
And I'll put it this way, you're wrong.

Case report of sexual transmission when viral load suppressed to <50 copies/mL

That was from October '08 and there are bound to have been other cases since.

You're thinking of the Swiss statement - but that involved heterosexual couples and it was looking at the risks of conceiving naturally and so was more about vaginal intercourse rather than anal.

Yes, thank you for correcting me. I forgot to add natural  ;) vaginal sex qualifier in my statement.
==========
Aug08 - Seroconversion
Mar10 - Diagnosis; cd4 690 - VL 19,000
Apr10 - cd4 600
May10 - VL 4,500
Jun10 - started Atripla ; VL 113
Jul 10 - UD vl, CD4 590
Aug 10 - UD, CD4 810, 52%
Nov 10 - UD, CD4 980

Offline Ann

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Re: Whats your opinion? Should I start Meds?
« Reply #53 on: July 15, 2010, 02:44:20 PM »
Yes, thank you for correcting me. I forgot to add natural  ;) vaginal sex qualifier in my statement.

There's nothing unnatural about anal sex. You're on thin ice with that little joke, mister.
Condoms are a girl's best friend

Condom and Lube Info  



"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline eric48

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Re: Whats your opinion? Should I start Meds?
« Reply #54 on: July 15, 2010, 04:02:46 PM »
This message is for Ann:

Ann,

you have an opinion that is quite discordant to the general opinion and mediacal trend of the moment.

(Maybe I should have read more of your posts before starting the meds, I do not know. I guess the SMART study will give me some answers. I was so dam worried at the time.)

And you make your point ! post after post !

So patiently ...


I admire you for that !

Eric
NVP/ABC/3TC/... UD; CD4 > 1000; CD4/CD8 ~ 2.0   safety stock : 3 months (2013: FOTO= 5d. ON 2d. OFF ; 2014: NCT02157311 = 4d. ON, 3d. OFF)

Offline Hellraiser

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Re: Whats your opinion? Should I start Meds?
« Reply #55 on: July 15, 2010, 07:37:39 PM »
Fine, I'm a long term survivor of 22 years.  You clearly don't comprehend the difference between pre-HAART treatment and post-HAART treatment.  Research this, comprehend the difference, and if you have further questions feel free to ask.

For once Philly and I are in complete agreement.  Everything I've read seems to state that as long as you are adherent you can remain on the same regimen from the beginning to end.

Offline wtfimpoz

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Re: Whats your opinion? Should I start Meds?
« Reply #56 on: July 15, 2010, 10:30:44 PM »
For once Philly and I are in complete agreement.  Everything I've read seems to state that as long as you are adherent you can remain on the same regimen from the beginning to end.

big "if" though.  Who has actually been on the same regime for a decade?
09/01/2009-neg
mid april, 2010, "flu like illness".
06/01/2010-weakly reactive ELISA, indeterminant WB
06/06/2010-reactive ELISA, confirmed positive.

DATE       CD4     %     VL
07/15/10  423     33    88k
08/28/10  489     19    189k
09/06/10-Started ATRIPLA
09/15/10  420     38    1400
11/21/10  517     25    51

Offline Hellraiser

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Re: Whats your opinion? Should I start Meds?
« Reply #57 on: July 15, 2010, 10:38:49 PM »
big "if" though.  Who has actually been on the same regime for a decade?

HAART has only been around for 14 years, but I know there are a couple people who have been on some of the older meds for a very long time.

Offline wtfimpoz

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Re: Whats your opinion? Should I start Meds?
« Reply #58 on: July 15, 2010, 11:00:07 PM »
HAART has only been around for 14 years, but I know there are a couple people who have been on some of the older meds for a very long time.

I've heard volumes about toxicity which all but completely prohibits a long term regime.  Specifially, liver issues.  Not just on this forum, but everywhere.  Is this uncommon?
09/01/2009-neg
mid april, 2010, "flu like illness".
06/01/2010-weakly reactive ELISA, indeterminant WB
06/06/2010-reactive ELISA, confirmed positive.

DATE       CD4     %     VL
07/15/10  423     33    88k
08/28/10  489     19    189k
09/06/10-Started ATRIPLA
09/15/10  420     38    1400
11/21/10  517     25    51

Offline Miss Philicia

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Re: Whats your opinion? Should I start Meds?
« Reply #59 on: July 15, 2010, 11:33:21 PM »
I've heard volumes about toxicity which all but completely prohibits a long term regime.  Specifially, liver issues.  Not just on this forum, but everywhere.  Is this uncommon?

Now you've moved the goal post to a side effect as opposed to resistance.  A post-HAART patient is more likely to change a regimen due to a side effect (like a liver issue) than they are to develop resistance.  These are separate issues.

As far as if liver issues are "uncommon" certainly it's far from unheard of, but no not every LTS'er has liver issues.  I've been on meds for 17 years and I don't have any liver issues.  And any other side effect issues I do have are from meds I took in the 90's that either were taken off the market or are no longer on the list or recommended medications.

Look I know all of this is new to you and stuff, but you're reading all of these things on the internet and not really understanding it all.  In fact, I'm still not convinced that you understand why LTS pre-HAART patients developed resistance issues as you ignored my previous post, which you yourself requested.
"I’ve slept with enough men to know that I’m not gay"

Offline wtfimpoz

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Re: Whats your opinion? Should I start Meds?
« Reply #60 on: July 16, 2010, 12:25:28 AM »
Now you've moved the goal post to a side effect as opposed to resistance.  A post-HAART patient is more likely to change a regimen due to a side effect (like a liver issue) than they are to develop resistance.  These are separate issues.

As far as if liver issues are "uncommon" certainly it's far from unheard of, but no not every LTS'er has liver issues.  I've been on meds for 17 years and I don't have any liver issues.  And any other side effect issues I do have are from meds I took in the 90's that either were taken off the market or are no longer on the list or recommended medications.

Look I know all of this is new to you and stuff, but you're reading all of these things on the internet and not really understanding it all.  In fact, I'm still not convinced that you understand why LTS pre-HAART patients developed resistance issues as you ignored my previous post, which you yourself requested.

You didn't exactly guide me in any direction, so I didn't bother responding.  I believe all you told me was to "read up" on the issue, and that I clearly don't understand it.  What kind of response do you want to that?  It was more of an insult than a helpful suggestion.  I'm guessing pre-haart patients developed resistance issues because they were treated with monotherapy which failed to adequately stem the replication of the virus, encouraging mutation against the therapeutic agents utilized.  Am I incorrect in guessing that while this may have ENCOURAGED mutation at a higher rate than today, an accidentally missed dose...or an imposed treatment holiday...could have the same effect?  Is there something inherent in the current regimes that disourages mutations against the compoents of the regimes?  I realize that there was some study where people skipped their meds on weekends, but I don't believe anyone has endorsed it as a great way to lower medical costs.  The rising rate of resistant new infections seems to indicate that HAART isn't a panacea against drug resistance.

As for "moving the goal post", my goal is to have a dialogue, not a contest.  There are plenty of people on this forum who will moisten their panties at the opportunity berate one another like third tier law students.  I'm sure I'll get there, but right now I really am trying to achieve an understanding.  I wasn't "moving the goal post", i was addressing another component of what I perceive to be an impediment in the long term sustainability of treatment, with long term treatment regimes presumably being necessary to prevent resistance.
09/01/2009-neg
mid april, 2010, "flu like illness".
06/01/2010-weakly reactive ELISA, indeterminant WB
06/06/2010-reactive ELISA, confirmed positive.

DATE       CD4     %     VL
07/15/10  423     33    88k
08/28/10  489     19    189k
09/06/10-Started ATRIPLA
09/15/10  420     38    1400
11/21/10  517     25    51

Offline Boze

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Re: Whats your opinion? Should I start Meds?
« Reply #61 on: July 16, 2010, 06:54:53 PM »

As for "moving the goal post", my goal is to have a dialogue, not a contest.  There are plenty of people on this forum who will moisten their panties at the opportunity berate one another like third tier law students.  I'm sure I'll get there, but right now I really am trying to achieve an understanding.  I wasn't "moving the goal post", i was addressing another component of what I perceive to be an impediment in the long term sustainability of treatment, with long term treatment regimes presumably being necessary to prevent resistance.

I think the issue is that you start off the conversation from a position of someone who is fairly knowledgeable AND negative on HAART. I think both of these aren't really true - ie you're fairly new to this and HAART is not that bad. But you don't so much ask questions as  make disparaging statements about the very thing that is (or will) keep all of us here alive.

So it's not all that surprising that the response you get is negative (in a sense that people disagree with you) and somewhat dismissive - which can be expected when one encounters a novice who takes such position. I understand that dealing with the news may be a bummer, but it's not all bad. I reckon that if you just pepper your commentary with "i think" and "i've read" and "what do you think", it would be more conducive to a dialogue.

That said - i'm not the most diplomatic person out there, so you might want to take my advice with a grain of salt.
==========
Aug08 - Seroconversion
Mar10 - Diagnosis; cd4 690 - VL 19,000
Apr10 - cd4 600
May10 - VL 4,500
Jun10 - started Atripla ; VL 113
Jul 10 - UD vl, CD4 590
Aug 10 - UD, CD4 810, 52%
Nov 10 - UD, CD4 980

Offline Hellraiser

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Re: Whats your opinion? Should I start Meds?
« Reply #62 on: July 17, 2010, 03:07:58 AM »
Am I incorrect in guessing that while this may have ENCOURAGED mutation at a higher rate than today, an accidentally missed dose...or an imposed treatment holiday...could have the same effect?

So I know this is difficult to comprehend but the way to avoid those mutations is to NOT MISS DOSES OR GO ON TREATMENT HOLIDAYS.

If you remain 95% adherent to your meds you shouldn't have any resistances develop.  By the way no one is encouraging you to take atripla and go 5on/2off it was just utilized as an example of how far off you could be on a dose (once undetectable) and still not develop mutation.

Offline wtfimpoz

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Re: Whats your opinion? Should I start Meds?
« Reply #63 on: July 17, 2010, 03:27:57 AM »
So I know this is difficult to comprehend but the way to avoid those mutations is to NOT MISS DOSES OR GO ON TREATMENT HOLIDAYS.

If you remain 95% adherent to your meds you shouldn't have any resistances develop.  By the way no one is encouraging you to take atripla and go 5on/2off it was just utilized as an example of how far off you could be on a dose (once undetectable) and still not develop mutation.

"Hard to comprehend"?  Are you this daft and rude in real life?  Obviously the way to avoid mutations is to avoid missing doses or going on treatment holidays. And the way to avoid HIV is to avoid exposure to the virus.  Obviously, none of us live in a world where hazards are completely avoided.  Thank you for explaining that the virus doesn't become immune at occasional lapses in treatment, but what about treatment interruptions that are imposed by circumstance?  Like interruptions in insurance coverage, or spotty coverage like this http://forums.poz.com/index.php?topic=33573.0 ?
No one can forsee the future, and for persons like myself who probably have the option of forgoing treatment for a while, it may make sense to stall medication for fear that they may lose their jobs in the near future. 
09/01/2009-neg
mid april, 2010, "flu like illness".
06/01/2010-weakly reactive ELISA, indeterminant WB
06/06/2010-reactive ELISA, confirmed positive.

DATE       CD4     %     VL
07/15/10  423     33    88k
08/28/10  489     19    189k
09/06/10-Started ATRIPLA
09/15/10  420     38    1400
11/21/10  517     25    51

Offline wtfimpoz

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Re: Whats your opinion? Should I start Meds?
« Reply #64 on: July 17, 2010, 03:45:28 AM »
I think the issue is that you start off the conversation from a position of someone who is fairly knowledgeable AND negative on HAART. I think both of these aren't really true - ie you're fairly new to this and HAART is not that bad. But you don't so much ask questions as  make disparaging statements about the very thing that is (or will) keep all of us here alive.

So it's not all that surprising that the response you get is negative (in a sense that people disagree with you) and somewhat dismissive - which can be expected when one encounters a novice who takes such position. I understand that dealing with the news may be a bummer, but it's not all bad. I reckon that if you just pepper your commentary with "i think" and "i've read" and "what do you think", it would be more conducive to a dialogue.

That said - i'm not the most diplomatic person out there, so you might want to take my advice with a grain of salt.

Understand, I'm not "negative on HAART", I'm concerned about its side effects, especially for those who may not need the drugs immediately.  One blogger on poz.com actually states that a component of ATRIPLA has left him with the "bones of an 85 year old woman".  I'm 28.  I'd like to avoid a broken hip for as long as possible.   I also think that you, as a non-american, need to understand that not everyone in the developed world has the easy access to drugs that you enjoy.  For many of us, interruptions in treatment are beyond our control.  Insurance coverage is at the caprice of our employers and the companies that issue policies.  For us, factors other than "do the drugs help more than hurt" enter the matrix.  If possible, the sustainability of a course of treatment should probably be addressed among other factors.  As for sugarcoating my thoughts and opinions with "I think" and "I feel"...are you kidding me? Seriously?   
09/01/2009-neg
mid april, 2010, "flu like illness".
06/01/2010-weakly reactive ELISA, indeterminant WB
06/06/2010-reactive ELISA, confirmed positive.

DATE       CD4     %     VL
07/15/10  423     33    88k
08/28/10  489     19    189k
09/06/10-Started ATRIPLA
09/15/10  420     38    1400
11/21/10  517     25    51

Offline Hellraiser

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Re: Whats your opinion? Should I start Meds?
« Reply #65 on: July 17, 2010, 03:48:44 AM »
You're just finding excuses.  If I told you all you had to do to keep your hiv in check was drink coffee you'd complain about the caffeine.  Grow up.

Offline wtfimpoz

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Re: Whats your opinion? Should I start Meds?
« Reply #66 on: July 17, 2010, 04:20:56 AM »
You're just finding excuses.  If I told you all you had to do to keep your hiv in check was drink coffee you'd complain about the caffeine.  Grow up.

 :o

You're right, because coffee retails for thounsands of dollars a month, requires a lifetime commitment, and causes osteopeirosis. I totally just need to grow up and stop weighing the various cost of drugs against their benefits.

 ::)
09/01/2009-neg
mid april, 2010, "flu like illness".
06/01/2010-weakly reactive ELISA, indeterminant WB
06/06/2010-reactive ELISA, confirmed positive.

DATE       CD4     %     VL
07/15/10  423     33    88k
08/28/10  489     19    189k
09/06/10-Started ATRIPLA
09/15/10  420     38    1400
11/21/10  517     25    51

Offline mecch

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Re: Whats your opinion? Should I start Meds?
« Reply #67 on: July 17, 2010, 06:13:13 AM »
Train wreck.
Going back to reading dlisted, for slightly less brain rot and much more fun.  8)
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline Ann

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Re: Whats your opinion? Should I start Meds?
« Reply #68 on: July 17, 2010, 11:50:35 AM »
You're just finding excuses.  If I told you all you had to do to keep your hiv in check was drink coffee you'd complain about the caffeine.  Grow up.

Do you have to be so rude? Maybe it's YOU who needs to grow up.

WTF, you have legitimate concerns about the cost and financial sustainability of treatment. I know if I still lived in the States, I'd be very concerned about this aspect too. Especially now with the ADAP crisis.

You need to make sure you know your insurance policy inside and out. You also need to learn the workings of programs like Ryan White, COBRA and ADAP, for future reference. Perhaps if you get involved in advocating for funding for these programs, you'd feel like you were doing some good and being pro-active and that can't be a bad thing.

Even though where I live we have socialised medicine, I still think about the costs. I often question the wisdom of doctors who put their patients on ARVs when they really don't yet need them. The funding for the NHS does not come from a bottomless well.
Condoms are a girl's best friend

Condom and Lube Info  



"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline Boze

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Re: Whats your opinion? Should I start Meds?
« Reply #69 on: July 17, 2010, 12:26:06 PM »
Understand, I'm not "negative on HAART", I'm concerned about its side effects, especially for those who may not need the drugs immediately.  One blogger on poz.com actually states that a component of ATRIPLA has left him with the "bones of an 85 year old woman".  I'm 28.  I'd like to avoid a broken hip for as long as possible.   I also think that you, as a non-american, need to understand that not everyone in the developed world has the easy access to drugs that you enjoy.  For many of us, interruptions in treatment are beyond our control.  Insurance coverage is at the caprice of our employers and the companies that issue policies.  For us, factors other than "do the drugs help more than hurt" enter the matrix.  If possible, the sustainability of a course of treatment should probably be addressed among other factors.  As for sugarcoating my thoughts and opinions with "I think" and "I feel"...are you kidding me? Seriously?   

Your attitude reminds me of a little child who doesn't like the present he got for christmas and is complaining to his parents about it. This sense of entitlement - as if you have a choice. Well, look, it is what it is. You have made poor choices and now you have to deal with consequences (this applies to all of us here, i'm not picking on you in particular).

HAART is the only available form of treatment. Some people - a very small percent - can stay off HAART for a long time. This is genetic - and there are tests for it, for example this one: https://www.23andme.com/health/HIV-Progression/  The percent of people who can stay off HAART is probably a lot smaller among recently infected (or population at large) than those who've been sick from the 80s-90s. Very simple reason - those who got sick in the 80s or 90s and couldn't deal with HIV before HAART have already died. So you have what is called 'survivorship bias'.

Anyways, the rest of the HIV+ population has no choice. However, most people today actually on HAART are doing just fine, with no side-effects. Yes, some people have issues - but you can't rely on anecdotal blogger's experience - because most people with no issues don't actually blog about it. Yes - truvada is associated with bone loss - but you have to actually find the relevant research paper that describes how prevalent it is and what the cofactors were - such as age and history of bone disease.

You seem to be worried about your long-term prospects. In that case, I'd recommend one thing - making sure your CD4s stay above 500. According to this recent paper, patients who keep their CD4 above 500 have the same life expectancy as general population: http://www.aidsmeds.com/articles/hiv_survival_mortality_1667_18083.shtml

As someone who went through what you are going through recently myself, I'd also caution against extrapolating the feedback you read on these forums as typical, for the same reason I alluded to earlier. People tend to write/complain about things that bother them. Those who just take a pill and don't have any issues or problems don't write about it. I asked the forum organizers to create a special section where people would provide feedback on their treatment - just to give novices an idea of how majority HIV+ on HAART are dealing with it. Unfortunately it wasn't deemed appropriate.
==========
Aug08 - Seroconversion
Mar10 - Diagnosis; cd4 690 - VL 19,000
Apr10 - cd4 600
May10 - VL 4,500
Jun10 - started Atripla ; VL 113
Jul 10 - UD vl, CD4 590
Aug 10 - UD, CD4 810, 52%
Nov 10 - UD, CD4 980

Offline Boze

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Re: Whats your opinion? Should I start Meds?
« Reply #70 on: July 17, 2010, 12:32:40 PM »
Even though where I live we have socialised medicine, I still think about the costs. I often question the wisdom of doctors who put their patients on ARVs when they really don't yet need them. The funding for the NHS does not come from a bottomless well.

Your cost-benefit analysis is missing a very important factor - those on HAART are unlikely to transmit. The cost savings resulting from reduction in new transmission may greatly outweigh the cost of keeping existing patients.
I would not go as far as to claim that there is a net benefit (or trust any mathematical model / paper that does) because it depends on a lot of unknown assumptions - biggest one is how likely an HIV+ person is to have unprotected sex.
But I think the economics may still be in favor of early treatment, see here: http://www.medscape.com/viewarticle/724006
==========
Aug08 - Seroconversion
Mar10 - Diagnosis; cd4 690 - VL 19,000
Apr10 - cd4 600
May10 - VL 4,500
Jun10 - started Atripla ; VL 113
Jul 10 - UD vl, CD4 590
Aug 10 - UD, CD4 810, 52%
Nov 10 - UD, CD4 980

Offline Hellraiser

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Re: Whats your opinion? Should I start Meds?
« Reply #71 on: July 17, 2010, 02:23:23 PM »
Do you have to be so rude? Maybe it's YOU who needs to grow up. 

Three posts into holding his hand is where I draw the line when he keeps coming up with reasons why HAART is either not effective, not worth it, or potentially too expensive.  He is better off than some of us in that he has insurance that will cover the cost.  I apologize if it seems rude, but it's quite annoying to have someone keep digging for reasons not to find the meds worthwhile.

Offline wtfimpoz

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Re: Whats your opinion? Should I start Meds?
« Reply #72 on: July 17, 2010, 03:48:21 PM »
Your cost-benefit analysis is missing a very important factor - those on HAART are unlikely to transmit. The cost savings resulting from reduction in new transmission may greatly outweigh the cost of keeping existing patients.
I would not go as far as to claim that there is a net benefit (or trust any mathematical model / paper that does) because it depends on a lot of unknown assumptions - biggest one is how likely an HIV+ person is to have unprotected sex.
But I think the economics may still be in favor of early treatment, see here: http://www.medscape.com/viewarticle/724006

Good point, and the notion that I'm less likely to infect is actually one of the most important factors in my mind.  This is not settled fact though.  As far as I'm aware, I'd been "safe" throughout my sexual experiences.  My probable time of infection didn't include alcohol or drug use, so i dind't just forget what I was doing.  I checked the condoms afterwards, proving that they were worn and didn't break.  Still poz.  Why?  I chose to listen to what I wanted to hear.  I believed the old cannard that they're "failsafe".  I felt safe in this claim and chose to expose myself to numerous contributing risks.  There is plenty of info out there indicating condoms are not foolproof, both from official and popular sources.  I'd even heard anecdotes from friends, and I still thought I was invincible because I wore them.  I believed this because I wanted to, not because it was any more believable than anything else.  Whoops, so wrong.  I cannot, in good conscience, put my partner at any risk.  I don't find the prophalyctic effects of HAART to be foolproof.  So for the time being, I'm greatful he doesn't really like anal sex anyways, and I'm waiting for something more definitive than "HAART may reduce risk of transmission" as a reason to start treatment.
09/01/2009-neg
mid april, 2010, "flu like illness".
06/01/2010-weakly reactive ELISA, indeterminant WB
06/06/2010-reactive ELISA, confirmed positive.

DATE       CD4     %     VL
07/15/10  423     33    88k
08/28/10  489     19    189k
09/06/10-Started ATRIPLA
09/15/10  420     38    1400
11/21/10  517     25    51

Offline wtfimpoz

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Re: Whats your opinion? Should I start Meds?
« Reply #73 on: July 17, 2010, 04:20:43 PM »
Your attitude reminds me of a little child who doesn't like the present he got for christmas and is complaining to his parents about it. This sense of entitlement - as if you have a choice. Well, look, it is what it is. You have made poor choices and now you have to deal with consequences (this applies to all of us here, i'm not picking on you in particular).

HAART is the only available form of treatment. Some people - a very small percent - can stay off HAART for a long time. This is genetic - and there are tests for it, for example this one: https://www.23andme.com/health/HIV-Progression/  The percent of people who can stay off HAART is probably a lot smaller among recently infected (or population at large) than those who've been sick from the 80s-90s. Very simple reason - those who got sick in the 80s or 90s and couldn't deal with HIV before HAART have already died. So you have what is called 'survivorship bias'.

Anyways, the rest of the HIV+ population has no choice. However, most people today actually on HAART are doing just fine, with no side-effects. Yes, some people have issues - but you can't rely on anecdotal blogger's experience - because most people with no issues don't actually blog about it. Yes - truvada is associated with bone loss - but you have to actually find the relevant research paper that describes how prevalent it is and what the cofactors were - such as age and history of bone disease.

You seem to be worried about your long-term prospects. In that case, I'd recommend one thing - making sure your CD4s stay above 500. According to this recent paper, patients who keep their CD4 above 500 have the same life expectancy as general population: http://www.aidsmeds.com/articles/hiv_survival_mortality_1667_18083.shtml

As someone who went through what you are going through recently myself, I'd also caution against extrapolating the feedback you read on these forums as typical, for the same reason I alluded to earlier. People tend to write/complain about things that bother them. Those who just take a pill and don't have any issues or problems don't write about it. I asked the forum organizers to create a special section where people would provide feedback on their treatment - just to give novices an idea of how majority HIV+ on HAART are dealing with it. Unfortunately it wasn't deemed appropriate.

My attitude reminds you of a child who is unhappy with a gift?  Again, I think that you're speaking VOLUMES about the way we who are positive view ourselves and one another.  I'm not a child.  I'm a grown man, making an unfortunante but very "grownup" cost/benefit analysis about when I should start a lifetime course of treatment.  This decisions is marbled with an almost profound understanding that it is I...through continued employment, savings and luck, who will pay for HAART.  I live in America.  We don't have a nanny state.  Nobody is "giving" me this shit  With more and more nails being put in the coffin of Ryan White, the truth is that if I don't provide for myself, I'm going to die.  I find the comparison to a child...from someone who will never have to choose between meds and food...especially insulting.  A child doesn't pay for his gifts.  HAART is not a "gift".  It is a profoundly expensive and potentially damaging medical treatment.  Our doctors are not "the adults", they are medical advisors, and their consensus has a history of being wrong.  As for it being a "sense of entitlement", no dude, its not a "sense of entitlement", its a wide-eyed view of the fact that there is no perfect answer, so I want to make the best choice for ME.    Truthfully, I find this notion of others being all knowing adults, and life-saving treatments to be "gifts", to be far more immature than my dissatisfaction with the potential side effects of the drugs.

As for the surviroship bias issue, I was very recently infected.  Probably within the last 3-4 months.  Its highly unlikely that I'll be in an immediate need of drugs.  Barring rapid progression, I may have years before HAART becomes necessary.  I work in a shakey industry, so I'm weighing the liklihood of continued treatment against the relative benefits of early treatment.  I'm not suggesting that I defer treatmetn indefinitely in the hopes that something better come along, but a year or two when I can ensure an uninterrupted course of treatment makes sense.

The papers predicting normal lifespan with cd4 beyond 500 are reassuring, and as an aside, I'll likely start treatment shortly after my cd4 drops below 500.  For the record, I don't really give a shit about life-span though.  The projections are so optimistic as to be almost laughable.  My doctor told me he thinks I've got another 45-50 years.  Thats honestly longer than I wanted to live before I tested positive.  I work with octogenarians occasionally.  Tyipcally, there is nothing left to their lives, and quality of life is what I care about.  The physical damage that HIV patients experience isn't the most terrifying for me.  Its cognitive decline.  And according to some studies I've read, the meds don't do much to stop or even slow it.  (And then I've read others that say the opposite.  Whats really scary about HAND is that they seem to have a hard time settling on factors that are predictive of it)

I agree with your final point that I shouldn't take everything I read to heart.  You've got a good point, and for the most part, I strongly respect what I read from you, but I disagree with a lot of it.  I would really like to get out and about and see how others with this disease are actually living.  I really think it'd be reassuring compared to the picture that exists in my mind.  Right now, I don't really know where to look for that though. 
09/01/2009-neg
mid april, 2010, "flu like illness".
06/01/2010-weakly reactive ELISA, indeterminant WB
06/06/2010-reactive ELISA, confirmed positive.

DATE       CD4     %     VL
07/15/10  423     33    88k
08/28/10  489     19    189k
09/06/10-Started ATRIPLA
09/15/10  420     38    1400
11/21/10  517     25    51

Offline wtfimpoz

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Re: Whats your opinion? Should I start Meds?
« Reply #74 on: July 17, 2010, 04:26:10 PM »
Three posts into holding his hand is where I draw the line when he keeps coming up with reasons why HAART is either not effective, not worth it, or potentially too expensive.  He is better off than some of us in that he has insurance that will cover the cost.  I apologize if it seems rude, but it's quite annoying to have someone keep digging for reasons not to find the meds worthwhile.

Again, you illustrate so much of whats wrong with HIV treatment and support.  So much handholding, so few answers or solutions.  I'm not looking for handholding, I'm trying to achieve understanding through dialogue.  The rubberstamp "the drugs are great and easily tolerated" line that newly-infected like myself get fed is actually kinda insulting when you're looking for concrete answers.  I recognize that I'm better off than some, but I also recognize that things dont' always roll out as planned.  I could lose my job.  My insurnace coverage could have caps.  I'm not "digging for reasons to not find the meds worthwhile", its that, for me as well as many others, they may not be, at least not immediately.  I find it quite annoying that you're so dismissive of others simply because you perceive them as being in a better boat than yourself some.
09/01/2009-neg
mid april, 2010, "flu like illness".
06/01/2010-weakly reactive ELISA, indeterminant WB
06/06/2010-reactive ELISA, confirmed positive.

DATE       CD4     %     VL
07/15/10  423     33    88k
08/28/10  489     19    189k
09/06/10-Started ATRIPLA
09/15/10  420     38    1400
11/21/10  517     25    51

Offline wtfimpoz

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Re: Whats your opinion? Should I start Meds?
« Reply #75 on: July 17, 2010, 04:38:05 PM »
Do you have to be so rude? Maybe it's YOU who needs to grow up.

WTF, you have legitimate concerns about the cost and financial sustainability of treatment. I know if I still lived in the States, I'd be very concerned about this aspect too. Especially now with the ADAP crisis.

You need to make sure you know your insurance policy inside and out. You also need to learn the workings of programs like Ryan White, COBRA and ADAP, for future reference. Perhaps if you get involved in advocating for funding for these programs, you'd feel like you were doing some good and being pro-active and that can't be a bad thing.

Even though where I live we have socialised medicine, I still think about the costs. I often question the wisdom of doctors who put their patients on ARVs when they really don't yet need them. The funding for the NHS does not come from a bottomless well.

Thanks al lot Ann.  I agree, it would be very constructive for me to get involved in some kind of advocacy.  As for the costs in socialized medicine, there is a doc's blog on poz.com who openly questions to what extent the push for earlier treatment has led to the current ADAP crisis, and how its tragic that public funds needed for those with "full blown AIDS" are being diverted to those with normal CD4 levels who may not even benefit from treatment.  He has a good point.  Personally, I wonder how long Her Majesty's (newly austere?) Health Service will be able to tolerate this early push. 

There has been SO MUCH emphasis on telling me not to kill myself, not to max out my credit cards, not to despair.  I've gotten spectacular advice, and my ASO caseworker guy has really been fantastic in holding my hand when I needed it, in understanding where I was emotionally and in walking me through how to navigate my interactions with the world.  He helped me find a doctor, and even called me to remind me to show up.  When I asked about financial planning for thie HIV positive (which I would presume to include better insurnace understanding), I was told that no such services existed.  Seriously?  For a disease with long term disability issues but supposedly "near normal" lifespan, this is a shocking lapse in service.   
09/01/2009-neg
mid april, 2010, "flu like illness".
06/01/2010-weakly reactive ELISA, indeterminant WB
06/06/2010-reactive ELISA, confirmed positive.

DATE       CD4     %     VL
07/15/10  423     33    88k
08/28/10  489     19    189k
09/06/10-Started ATRIPLA
09/15/10  420     38    1400
11/21/10  517     25    51

Offline Ann

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Re: Whats your opinion? Should I start Meds?
« Reply #76 on: July 17, 2010, 04:58:13 PM »
As for the costs in socialized medicine, there is a doc's blog on poz.com who openly questions to what extent the push for earlier treatment has led to the current ADAP crisis, and how its tragic that public funds needed for those with "full blown AIDS" are being diverted to those with normal CD4 levels who may not even benefit from treatment.  He has a good point.  Personally, I wonder how long Her Majesty's (newly austere?) Health Service will be able to tolerate this early push. 

Yes, this is exactly what I'm worried about.


When I asked about financial planning for thie HIV positive (which I would presume to include better insurnace understanding), I was told that no such services existed.  Seriously?  For a disease with long term disability issues but supposedly "near normal" lifespan, this is a shocking lapse in service.   

I have no idea what you do for a living, but if you're in anything remotely financial, maybe this is a niche market you could fill with your own business. Something you could do on the side.

Your cost-benefit analysis is missing a very important factor - those on HAART are unlikely to transmit. The cost savings resulting from reduction in new transmission may greatly outweigh the cost of keeping existing patients.
I would not go as far as to claim that there is a net benefit (or trust any mathematical model / paper that does) because it depends on a lot of unknown assumptions - biggest one is how likely an HIV+ person is to have unprotected sex.
But I think the economics may still be in favor of early treatment, see here: http://www.medscape.com/viewarticle/724006

Give me a break. Condoms don't cost tens of thousands of dollars/pounds to purchase every year and I don't care how much sex a person is having. I find the whole "treat to stop onward infections" idea to be rather offensive - as though I cannot be trusted to use condoms.
Condoms are a girl's best friend

Condom and Lube Info  



"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline phildinftlaudy

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Re: Whats your opinion? Should I start Meds?
« Reply #77 on: July 17, 2010, 05:05:28 PM »
I have no idea what you do for a living, but if you're in anything remotely financial, maybe this is a niche market you could fill with your own business. Something you could do on the side.

I agree with Ann.  I am a grant writer for a nonprofit and do grant consulting work.  I could definitely see this as a service that many funders would support.  Perhaps, bring it up to your ASO (I know that I will be doing the same with the organization I work for).  Many ASOs don't have this service because they are used to working with populations that receive Ryan White or other government assistance for care, thus they didn't see the need to include a service that translates the coverage of private insurance.

I could see the Robert Wood Johnson Foundation or Pew Charitable Trust supporting something like this, as well as local foundation support.  The cost to implement would not be extensive and it would be easy to show the need - more people are living with HIV, working an have some type of private insurance.
September 13, 2008 - diagnosed +
Labs:
Date    CD4    %   VL     Date  CD4  %   VL
10/08  636    35  510   9/09 473  38 2900  12/4/09 Atripla
12/09  540    30    60   
12/10  740    41  <48   
8/11    667    36  <20  
03/12  1,041  42  <20
05/12  1,241  47  <20
08/12   780    37  <20
11/12   549    35  <20
02/12  1,102  42  <20
11/12   549    35  <20

Offline RapidRod

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Re: Whats your opinion? Should I start Meds?
« Reply #78 on: July 17, 2010, 05:21:15 PM »

I don't trust you.  Are you sure you didn't have any heath problem, hospitalization or the same and were not on meds since thirteen years of your diagnosis.   ::)
I wasn't on meds for 21 years after being diagnosed.

Offline Miss Philicia

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Re: Whats your opinion? Should I start Meds?
« Reply #79 on: July 17, 2010, 05:49:47 PM »
There's a man named Per Larson who wrote this book and gives seminars on HIV/financial planning at Friends In Deed in NYC, and has been doing so for 15 years.  He also offers private counseling for a fee.

But Larson is about more than just private insurance issues.  Getting someone to look at your own policy and riders to same has been provided by every local ASO where I've lived since diagnosis.
"I’ve slept with enough men to know that I’m not gay"

Offline Boze

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Re: Whats your opinion? Should I start Meds?
« Reply #80 on: July 17, 2010, 06:16:10 PM »
wtfpoz,

I think you misunderstood a few of my points, just want to clear up my views.

1) I was talking about *general* attitude towards HAART, not telling you when to start. Hence my comment about acting like a child - it was more in regard to your dissatisfaction that HAART is not perfect. All I meant is that we should be grateful it is there since sooner or later all of us will need it.
2) I think your idea to start treatment after breaching 500 is reasonable - that's the latest American recommendation (and I think American doctors are the best :)
3) I would really encourage you to investigate the viability of using generic Atripla. In the thread I referred to earlier Ann and a few others have given references to people who do, etc. If you are worried about being able to afford HAART - and the online pharmacy is selling legit generic version of Atripla for $150 a month - it would be a good idea to know.
I would be skeptical about some Indian company selling fake stuff - IF these drugs actually cost anything to make. But they really do not - hence most of the $150 is pure profit. So it is in the interest of the seller to sell you the real deal forever, rather than sell you a Tylenol for a few months before you realize it's fake.
==========
Aug08 - Seroconversion
Mar10 - Diagnosis; cd4 690 - VL 19,000
Apr10 - cd4 600
May10 - VL 4,500
Jun10 - started Atripla ; VL 113
Jul 10 - UD vl, CD4 590
Aug 10 - UD, CD4 810, 52%
Nov 10 - UD, CD4 980

Offline Boze

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Re: Whats your opinion? Should I start Meds?
« Reply #81 on: July 17, 2010, 06:20:56 PM »

Give me a break. Condoms don't cost tens of thousands of dollars/pounds to purchase every year and I don't care how much sex a person is having. I find the whole "treat to stop onward infections" idea to be rather offensive - as though I cannot be trusted to use condoms.

C'mon - all of us failed to use condoms in the first place, hence got ill. And majority of people actually get sick from random encounters - ie they *should* be smart enough to use them. Unfortunately they impair the sexual experience - otherwise everybody would just use them.
So the fact that people don't always use condoms is just a fact of life. The key is to recognize it and deal with it, rather than expect people to change.
==========
Aug08 - Seroconversion
Mar10 - Diagnosis; cd4 690 - VL 19,000
Apr10 - cd4 600
May10 - VL 4,500
Jun10 - started Atripla ; VL 113
Jul 10 - UD vl, CD4 590
Aug 10 - UD, CD4 810, 52%
Nov 10 - UD, CD4 980

Offline mecch

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Re: Whats your opinion? Should I start Meds?
« Reply #82 on: July 17, 2010, 06:28:29 PM »
And majority of people actually get sick from random encounters

Where do you get these figures?
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline Boze

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Re: Whats your opinion? Should I start Meds?
« Reply #83 on: July 17, 2010, 06:37:43 PM »
Where do you get these figures?

This is a combination of common sense and observation of this forum:

1) Common sense: venereal diseases are generally acquired from new partners. People who are in monogamous relationships would only get it IF their partner strayed and passed it to them. While can happen - it's a second order effect (probability that one's partner strays * probability he gets sick)

2) Observation of this forum - the people who got ill from their longstanding partners are few and between.  Most people either don't talk about it or actually say that 'they should've known better'
==========
Aug08 - Seroconversion
Mar10 - Diagnosis; cd4 690 - VL 19,000
Apr10 - cd4 600
May10 - VL 4,500
Jun10 - started Atripla ; VL 113
Jul 10 - UD vl, CD4 590
Aug 10 - UD, CD4 810, 52%
Nov 10 - UD, CD4 980

Offline mecch

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Re: Whats your opinion? Should I start Meds?
« Reply #84 on: July 17, 2010, 06:52:38 PM »
Overdetermined once again, and not very scientific. I thought you aspired to be free research assistant.
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline Boze

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Re: Whats your opinion? Should I start Meds?
« Reply #85 on: July 17, 2010, 07:22:42 PM »
Overdetermined once again, and not very scientific. I thought you aspired to be free research assistant.

what is overdetermined?

Look - to me this is just common sense. Here is a paper that describes the model: http://aris.ss.uci.edu/~lin/56.pdf

Do you think otherwise?
==========
Aug08 - Seroconversion
Mar10 - Diagnosis; cd4 690 - VL 19,000
Apr10 - cd4 600
May10 - VL 4,500
Jun10 - started Atripla ; VL 113
Jul 10 - UD vl, CD4 590
Aug 10 - UD, CD4 810, 52%
Nov 10 - UD, CD4 980

Offline RapidRod

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Re: Whats your opinion? Should I start Meds?
« Reply #86 on: July 17, 2010, 07:44:17 PM »
what is overdetermined?

Look - to me this is just common sense. Here is a paper that describes the model: http://aris.ss.uci.edu/~lin/56.pdf

Do you think otherwise?
AIDS 1997, don't you have anything that is not outdated?

Offline Boze

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Re: Whats your opinion? Should I start Meds?
« Reply #87 on: July 17, 2010, 07:51:43 PM »
AIDS 1997, don't you have anything that is not outdated?

It's a MATHEMATICAL model of how disease spreads. In math the pace and nature of scientific progress is very different from medicine/biology. For example the math developed by the Greeks is just as relevant today - which we can't say about their views on other sciences :)

My guesstimate is that maybe 5-10% of infections happen within relationships.
==========
Aug08 - Seroconversion
Mar10 - Diagnosis; cd4 690 - VL 19,000
Apr10 - cd4 600
May10 - VL 4,500
Jun10 - started Atripla ; VL 113
Jul 10 - UD vl, CD4 590
Aug 10 - UD, CD4 810, 52%
Nov 10 - UD, CD4 980

Offline wtfimpoz

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Re: Whats your opinion? Should I start Meds?
« Reply #88 on: July 17, 2010, 08:01:26 PM »
It's a MATHEMATICAL model of how disease spreads. In math the pace and nature of scientific progress is very different from medicine/biology. For example the math developed by the Greeks is just as relevant today - which we can't say about their views on other sciences :)

My guesstimate is that maybe 5-10% of infections happen within relationships.

Boze has a point.  This is a case of overdebating the obvious.  Even if the overwhelming bulk of anecdotal evidence didn't bear this out, common sense does.
09/01/2009-neg
mid april, 2010, "flu like illness".
06/01/2010-weakly reactive ELISA, indeterminant WB
06/06/2010-reactive ELISA, confirmed positive.

DATE       CD4     %     VL
07/15/10  423     33    88k
08/28/10  489     19    189k
09/06/10-Started ATRIPLA
09/15/10  420     38    1400
11/21/10  517     25    51

Offline mecch

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Re: Whats your opinion? Should I start Meds?
« Reply #89 on: July 18, 2010, 06:24:18 AM »
"Not being in a relationship" is not the same as "random encounters"

Though I can support epidemiological models of disease spread, I also think you build arguments based on hunches and what makes sense to you. We have seen prejudices and biases creep into your sweeping arguments before.  Show us real epidemiology, recent research, or just say "I THINK" and not that sneaky way you have of building arguments on your emotional and psychological needs and passing them off as "shared", "common", or even "science", or "fact".

Overdetermined in the Freudian sense - that's the vibe I get from a lot of your more longer-winded posts. Arguments as symptoms - coming out of your own psychological and emotional needs and hurts.

Its nothing personal, I admire your enthusiasm.  Put it this way, since you have appointed yourself the "free research assistant" you can consider that you now have a "peer review" process for such wind-bag arguments.
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline Boze

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Re: Whats your opinion? Should I start Meds?
« Reply #90 on: July 18, 2010, 08:07:02 AM »
C'mon, let's not start the 'you say what you do because you actually hurt inside'. I am very familiar with the method of analyzing the messenger rather than the message. And I don't want to come back via same route (as I've seen plenty others use personal information gleaned from random posts in rebuttals, which I consider kinda weak), so I just propose we don't go down that road.

Yes - the idea that most people in Western world got HIV from random encounters is not based on research - to me it's just logical. A random encounter is sex outside a relationship. Relationship doesn't mean marriage - just a stable partnership (could even be concurrent).

If this strikes you as moralistic - I'm sorry, I'm just calling it how I see it.

==========
Aug08 - Seroconversion
Mar10 - Diagnosis; cd4 690 - VL 19,000
Apr10 - cd4 600
May10 - VL 4,500
Jun10 - started Atripla ; VL 113
Jul 10 - UD vl, CD4 590
Aug 10 - UD, CD4 810, 52%
Nov 10 - UD, CD4 980

Offline Ann

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Re: Whats your opinion? Should I start Meds?
« Reply #91 on: July 18, 2010, 09:27:11 AM »
Put it this way, since you have appointed yourself the "free research assistant" you can consider that you now have a "peer review" process for such wind-bag arguments.

Fair comment. If you post your theories here, you're going to be subject to a "peer review" process.

I was in a relationship when I got my lurgy. It was brought home to me. This happens more often than you seem to realise.
Condoms are a girl's best friend

Condom and Lube Info  



"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline Boze

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Re: Whats your opinion? Should I start Meds?
« Reply #92 on: July 18, 2010, 10:21:16 AM »
Fair comment. If you post your theories here, you're going to be subject to a "peer review" process.

I was in a relationship when I got my lurgy. It was brought home to me. This happens more often than you seem to realise.

Yeah, I think that's reasonable - i'm only happy to have my ideas subjected to scrutiny.

I also remember your story - as a few others who specifically mentioned it. There certainly is a sense of 'it's really unfair' to that method of transmission, which I think mitigates (or rather totally removes) the 'guilt factor'.
But majority of people here never mention this - which makes me assume that they got it outside of relationships.
==========
Aug08 - Seroconversion
Mar10 - Diagnosis; cd4 690 - VL 19,000
Apr10 - cd4 600
May10 - VL 4,500
Jun10 - started Atripla ; VL 113
Jul 10 - UD vl, CD4 590
Aug 10 - UD, CD4 810, 52%
Nov 10 - UD, CD4 980

Offline max123

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Re: Whats your opinion? Should I start Meds?
« Reply #93 on: July 18, 2010, 11:04:17 AM »
the op's topic question is probably the most compelling of all, for the majority of us afflicted with hiv.

unfortunately, the current hiv meds funding issues here in the usa has thrown an additional curveball into the mix. but, in attempting to stay on track with the topic essence from a physical health standpoint, most respondents raised some excellent points (albethey polar).

there is building & published evidence suggesting that keeping cd4 above 500 may reduce the incidence of hiv related, hiv exacerbated & non-hiv related disease in us pozzies. many seasoned forum members suggest deferring arv/haart until later on in the course of disease (350-400 and, or <500 cd4 range); the rationale being that the potential long term effects of meds use is unknown (an agreed upon point).  however, from having participated in this forum for a year now, it is apparent to me that many forum members suffer from ill effects such as hiv related diarrhea, chronic fatigue, osteoarthritis, etc... it also appears that many of these same forum members were also either diagnosed in advanced stages of hiv with low cd4 counts, had poor access to competent medical care, had no access to less toxic meds, do not take meds, etc....the prevailing common observation that i see is that many of said forum members whom for one reason or another, maintained cd4 counts less than 500, seem to make up a large majority of those suffering from so many maladies. note: this is merely an observation and not a conclusion. this may be totally coincidental or not. maybe it's simply the expected course of events that comes along with being poz. truth is, i really don't know, which is why i'm asking: are any of you all, that are suffering from hiv related, hiv exacerbated & non-hiv related maladies and that have maintained cd4 counts <500, feel these maladies may have been eliminated or lessened by having started meds earlier, e.g. at cd4 at, or > 500?

newt raised a really good point in citing the importance of the smart study. but until the results are published several years from now, it seems to me the best deciding factors on when to start meds are found in to date studies, your doc, and of course, through knowledge shared on this forum. it's all we really have...

max
« Last Edit: July 18, 2010, 01:03:25 PM by max123 »
1/86 - 6/08 (annually): neg elisa
7/09: pos elisa/pos wb
8/09: cd4 560, cd4% 35, vl 13,050
12/09: cd4 568, cd4% 33, vl 2,690
4/10: cd4 557, cd4% 29.3, vl 6,440
7/10: cd4 562, cd4% 29.6, vl 3,780

Offline northernguy

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Re: Whats your opinion? Should I start Meds?
« Reply #94 on: July 18, 2010, 11:52:58 AM »
Its interesting that most of the discussion here has focused on cd4.  What about %, I thought that was supposed to be the more reliable indicator?

As in my signature, my cd4's were OK, on a slow downward trend but the % had shown a consistent low point.  Coupled with my skin issues I used that as the basis to start taking meds, my doc probably would have rather waited a bit longer.  As luck would have it my skin issues didn't change and my cd4 dropped after starting!  I'm beginning to think its all voodoo...  :P
Apr 28/06 cd4 600 vl 10,600 cd% 25
Nov 8/09 cd4 510 vl 49,5000 cd% 16
Jan 16/10 cd4 660 vl 54,309 cd% 16
Feb 17/10 Started Atripla
Mar 7/10 cd4 710 vl 1,076 cd% 21
Apr 18/10 cd4 920 vl 268 cd% 28
Jun 19/10 cd4 450 vl 60 cd% 25
Aug 15/10 cd4 680 vl 205 cd% 27
Apr 3/11 cd4 780 vl <40 cd% 30
Jul 17/11 cd4 960 vl <40 cd%33
April 15/12 cd4 1,010 vl <40 cd% 39
April 20/12 Switched to Viramune + Truvada
Aug 2/12 cd4 1040, vl <40, cd% 38
Oct 19 cd4 1,110 vl <40 cd% 41

Offline Hellraiser

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Re: Whats your opinion? Should I start Meds?
« Reply #95 on: July 18, 2010, 12:13:31 PM »
C'mon, let's not start the 'you say what you do because you actually hurt inside'. I am very familiar with the method of analyzing the messenger rather than the message. And I don't want to come back via same route (as I've seen plenty others use personal information gleaned from random posts in rebuttals, which I consider kinda weak), so I just propose we don't go down that road.

He's not saying it to attack you as a person, but you do something you may not be aware of:  You pawn your experience off as fundamental truth.  We're all guilty of it to varying degrees, but you're probably the most pronounced case on these forums.  You've utilized studies to back your experience and opinion but have you ever changed your mind due to scientific evidence?  That's rhetorical by the way.  I'm only a couple of months ahead of you in diagnosis and treatment and I certainly don't know everything there is to know, but I came from a place of complete ignorance where HIV was concerned and realize that there is a lot of information to take in.  When confronted with evidence that profoundly contradicts what I think I question it and then if it is corroborated by another report and group consensus I tend to adopt it.  What I've noticed you tend to do is fight tooth and nail for what you think is right regardless of what may be staring you in the face.

Offline Ann

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Re: Whats your opinion? Should I start Meds?
« Reply #96 on: July 18, 2010, 12:52:16 PM »
There certainly is a sense of 'it's really unfair' to that method of transmission, which I think mitigates (or rather totally removes) the 'guilt factor'.
But majority of people here never mention this - which makes me assume that they got it outside of relationships.

Not for me, I've always taken full responsibility for 1 - not insisting on monogamy from him and kicking him to the kerb if/when he refused and 2 - not insisting on condoms even though I knew he wasn't being monogamous. I thought the worst he could bring home was chlamydia. Stupid me. No chlamydia, just the biggie. Sod's law.

But majority of people here never mention this - which makes me assume that they got it outside of relationships.

I think a lot of people don't mention it or gloss over it because it's not necessarily a nice thing to admit that your lover is seeing others behind your back.

And a lot more people end up infected even in monogamous relationships because they never bothered to test before not using condoms together. In other words, one partner unwittingly brought pre-existing hiv into their monogamous relationship.

See, this is one of the reasons why so many people look down their noses at us - they assume that if we got the butt flu, we had to be Promiscuous Sluts and Hooray Henry Whores. It simply ain't so.
Condoms are a girl's best friend

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"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline Boze

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Re: Whats your opinion? Should I start Meds?
« Reply #97 on: July 18, 2010, 01:06:17 PM »
He's not saying it to attack you as a person, but you do something you may not be aware of:  You pawn your experience off as fundamental truth.  We're all guilty of it to varying degrees, but you're probably the most pronounced case on these forums.  You've utilized studies to back your experience and opinion but have you ever changed your mind due to scientific evidence?  That's rhetorical by the way.  I'm only a couple of months ahead of you in diagnosis and treatment and I certainly don't know everything there is to know, but I came from a place of complete ignorance where HIV was concerned and realize that there is a lot of information to take in.  When confronted with evidence that profoundly contradicts what I think I question it and then if it is corroborated by another report and group consensus I tend to adopt it.  What I've noticed you tend to do is fight tooth and nail for what you think is right regardless of what may be staring you in the face.

Fair enough. But I'm not sure I have actually "fought" a view that is backed up by scientific fact. For example on this question - we have complete lack of data. So it's really just a matter of differing opinions.

I'd be happy to even conduct a small poll to see what it's actually like.

And a lot more people end up infected even in monogamous relationships because they never bothered to test before not using condoms together. In other words, one partner unwittingly brought pre-existing hiv into their monogamous relationship.

See, this is one of the reasons why so many people look down their noses at us - they assume that if we got the butt flu, we had to be Promiscuous Sluts and Hooray Henry Whores. It simply ain't so.

This may be more true for women, not sure about men. Given that men make up majority of new infections - their slutiness outweighs.



==========
Aug08 - Seroconversion
Mar10 - Diagnosis; cd4 690 - VL 19,000
Apr10 - cd4 600
May10 - VL 4,500
Jun10 - started Atripla ; VL 113
Jul 10 - UD vl, CD4 590
Aug 10 - UD, CD4 810, 52%
Nov 10 - UD, CD4 980

Offline Ann

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Re: Whats your opinion? Should I start Meds?
« Reply #98 on: July 18, 2010, 01:24:42 PM »
This may be more true for women, not sure about men. Given that men make up majority of new infections - their slutiness outweighs.

I'm going by what I've read here since the spring of 2001 - over nine years of reading people's experiences. You've been here a little over three months and don't have the same perspective.
Condoms are a girl's best friend

Condom and Lube Info  



"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline Boze

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Re: Whats your opinion? Should I start Meds?
« Reply #99 on: July 18, 2010, 01:31:51 PM »
I'm going by what I've read here since the spring of 2001 - over nine years of reading people's experiences. You've been here a little over three months and don't have the same perspective.

Fair enough - so what % of infections would you attribute to 'within relationship'?

I also think there is a  reporting bias - the less 'guilty' are more likely to describe their experience.
==========
Aug08 - Seroconversion
Mar10 - Diagnosis; cd4 690 - VL 19,000
Apr10 - cd4 600
May10 - VL 4,500
Jun10 - started Atripla ; VL 113
Jul 10 - UD vl, CD4 590
Aug 10 - UD, CD4 810, 52%
Nov 10 - UD, CD4 980

Offline mecch

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Re: Whats your opinion? Should I start Meds?
« Reply #100 on: July 18, 2010, 01:41:43 PM »
The question is - why is that important, how HIV is transmitted, and not the least, in this thread?
You've got a stack of value judgments attached to ways people get infected.  And then, to boot, you create epidemiology out of thin air. Why don't you open a thread and discuss if it is so fascinating. 

I think this thread should return to the OP topic, please.
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline Boze

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Re: Whats your opinion? Should I start Meds?
« Reply #101 on: July 18, 2010, 01:52:00 PM »
The question is - why is that important, how HIV is transmitted, and not the least, in this thread?
You've got a stack of value judgments attached to ways people get infected.  And then, to boot, you create epidemiology out of thin air. Why don't you open a thread and discuss if it is so fascinating. 

I think this thread should return to the OP topic, please.

I'll explain how we got here.

Ann said that if people would simply always use condoms there would be no added benefit to keeping HIV+ on HAART since transmission would be totally reduced. I replied that condoms are often not used, even during sexual encounters with people one doesn't know well - which is how I think most people get HIV in the first place (ie sexual encounters outside intimate relationships). Since people consciously take such risks, there must be a reason - ie condoms reduce the experience.

Then you called me on (admittedly unsubstantiated on my part) statement that most ppl get HIV from random sex.

My point still stands - I think that HAART is an effective answer (for now) to stopping the epidemic.

I found this paper dealing with MSM in germany: http://www.eurosurveillance.org/ViewArticle.aspx?ArticleId=645

==========
Aug08 - Seroconversion
Mar10 - Diagnosis; cd4 690 - VL 19,000
Apr10 - cd4 600
May10 - VL 4,500
Jun10 - started Atripla ; VL 113
Jul 10 - UD vl, CD4 590
Aug 10 - UD, CD4 810, 52%
Nov 10 - UD, CD4 980

Offline skeebo1969

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Re: Whats your opinion? Should I start Meds?
« Reply #102 on: July 18, 2010, 02:11:29 PM »


  LOL why are we debating conceivable risks? 
I despise the song Love is in the Air, you should too.

Offline Ann

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Re: Whats your opinion? Should I start Meds?
« Reply #103 on: July 18, 2010, 02:24:21 PM »
Fair enough - so what % of infections would you attribute to 'within relationship'?

I haven't a clue about exact percentages. I just know what I've read over the years. You seem to think that most people got it by being promiscuous. Sure, some people have, but I'm of the opinion that plenty of people got it in relationships, either when one came to the relationship with a pre-existing infection they didn't know about, or through one partner having sex outside the relationship.

But majority of people here never mention this - which makes me assume that they got it outside of relationships.

This is one instance where you allude to people being promiscuous.

I also think there is a  reporting bias - the less 'guilty' are more likely to describe their experience.

Plenty of people who were being promiscuous admit to it. But to ascribe the word "guilty" to the situation is just so wrong and prejudicially loaded.

I still say the whole "get them on treatment to stop transmission" thing is just so wrong. Condoms are effective in stopping treatment - and we know this through studies - and much less expensive than treatment.

For one thing, it's like we can't be trusted to use condoms and that just reinforces the promiscuous slut perception of people with hiv.

For another thing, for too many people it's a licence to bareback. An undetectable viral load isn't a guarantee to stop onward transmission, especially in the case of anal intercourse. You still need to use condoms with hiv negative people regardless of your VL. So that makes your argument of "people don't always use condoms" a moot point.

Sure, you can argue that condoms aren't a guarantee either, but in a person who does not yet need treatment, they're effective and COST effective too.

But anyway, I'm getting bored with this. We'll just have to agree to disagree.
Condoms are a girl's best friend

Condom and Lube Info  



"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline newt

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Re: Whats your opinion? Should I start Meds?
« Reply #104 on: July 18, 2010, 04:41:37 PM »
Transmission in relationships between men is common, not just because of playing away (sanctioned or otherwise) but also trust, comfort, inconsistency with condoms when in an intimate rather than recreational setting etc. It is well documented.

Graphs are difficult. For example, in the one posted above it could just inform you that people are more likely to declare unprotected anal intercourse in 2002 compared to 1996. I could go on... In science a 1,000 words is worth a picture in my book. Graphs, bah! difficult.

- matt
"The object is to be a well patient, not a good patient"

Offline Assurbanipal

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Re: Whats your opinion? Should I start Meds?
« Reply #105 on: July 18, 2010, 10:05:58 PM »
Again, you illustrate so much of whats wrong with HIV treatment and support.  So much handholding, so few answers or solutions.  I'm not looking for handholding, I'm trying to achieve understanding through dialogue.  The rubberstamp "the drugs are great and easily tolerated" line that newly-infected like myself get fed is actually kinda insulting when you're looking for concrete answers.  I recognize that I'm better off than some, but I also recognize that things dont' always roll out as planned.  I could lose my job.  My insurnace coverage could have caps.  I'm not "digging for reasons to not find the meds worthwhile", its that, for me as well as many others, they may not be, at least not immediately.  I find it quite annoying that you're so dismissive of others simply because you perceive them as being in a better boat than yourself some.

There's a logical problem here.

The fact that you may have financial issues in the future that will cause you to discontinue the drugs is not a reason to delay beginning them today.  There's been no studies that show that stopping the drugs leaves your immune system in worse shape than never starting them. 

Perhaps you are confused about whether stopping the drugs means you will become resistant to them and lose them as treatment options in the future.  This can happen if you start and stop the drugs haphazardly.  But if you should need to stop the drugs because of financial issues in the future, you should have the opportunity to do so in a planned manner that makes the likelihood of acquiring resistance tiny.

In essence you are using your anxiety about the future as a reason not to take action to improve your health today by making it into a false choice of go on drugs forever or delay.  That's not the actual choice facing you.  You could instead make the choice one of should I try the drugs for a year and then reevaluate with my doctor or delay for a year.  That's a more realistic choice and avoids a lot of the hysteria.

5/06 VL 1M+, CD4 22, 5% , pneumonia, thrush -- O2 support 2 months, 6/06 +Kaletra/Truvada
9/06 VL 3959 CD4 297 13.5% 12/06 VL <400 CD4 350 15.2% +Pravachol
2007 VL<400, 70, 50 CD4 408-729 16.0% -19.7%
2008 VL UD CD4 468 - 538 16.7% - 24.6% Osteoporosis 11/08 doubled Pravachol, +Calcium/D
02/09 VL 100 CD4 616 23.7% 03/09 VL 130 5/09 VL 100 CD4 540 28.4% +Actonel (osteoporosis) 7/09 VL 130
8/09  new regimen Isentress/Epzicom 9/09 VL UD CD4 621 32.7% 11/09 VL UD CD4 607 26.4% swap Isentress for Prezista/Norvir 12/09 (liver and muscle issues) VL 50
2010 VL UD CD4 573-680 26.1% - 30.9% 12/10 VL 20
2011 VL UD-20 CD4 568-673 24.7%-30.6%
2012 VL UD swap Prezista/Norvir for Reyataz drop statin CD4 768-828 26.7%-30.7%

Offline wtfimpoz

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Re: Whats your opinion? Should I start Meds?
« Reply #106 on: July 18, 2010, 11:55:29 PM »
There's a logical problem here.

The fact that you may have financial issues in the future that will cause you to discontinue the drugs is not a reason to delay beginning them today.  There's been no studies that show that stopping the drugs leaves your immune system in worse shape than never starting them. 

Perhaps you are confused about whether stopping the drugs means you will become resistant to them and lose them as treatment options in the future.  This can happen if you start and stop the drugs haphazardly.  But if you should need to stop the drugs because of financial issues in the future, you should have the opportunity to do so in a planned manner that makes the likelihood of acquiring resistance tiny.

In essence you are using your anxiety about the future as a reason not to take action to improve your health today by making it into a false choice of go on drugs forever or delay.  That's not the actual choice facing you.  You could instead make the choice one of should I try the drugs for a year and then reevaluate with my doctor or delay for a year.  That's a more realistic choice and avoids a lot of the hysteria.



Actually, yes, I did assume that ceasing the drugs resulted in resistance, or likely resistnace.  It was also my understanding that after ceasing drugs, CD4 dropped faster than at normal speed.  Apparently I am incorrect, and this is reassuring.  So many people have stated that "once you're on them, you should be prepared for a lifelong commitment" that I assumed they required, well, a lifelong commitment. 
09/01/2009-neg
mid april, 2010, "flu like illness".
06/01/2010-weakly reactive ELISA, indeterminant WB
06/06/2010-reactive ELISA, confirmed positive.

DATE       CD4     %     VL
07/15/10  423     33    88k
08/28/10  489     19    189k
09/06/10-Started ATRIPLA
09/15/10  420     38    1400
11/21/10  517     25    51

Offline wtfimpoz

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Re: Whats your opinion? Should I start Meds?
« Reply #107 on: July 18, 2010, 11:58:18 PM »
So given my insurance concerns, would it make more sense to start immediately, with the expectation of needing to preserve my immune system for inevitable lapses in insurance?
09/01/2009-neg
mid april, 2010, "flu like illness".
06/01/2010-weakly reactive ELISA, indeterminant WB
06/06/2010-reactive ELISA, confirmed positive.

DATE       CD4     %     VL
07/15/10  423     33    88k
08/28/10  489     19    189k
09/06/10-Started ATRIPLA
09/15/10  420     38    1400
11/21/10  517     25    51

Offline Hellraiser

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Re: Whats your opinion? Should I start Meds?
« Reply #108 on: July 19, 2010, 12:47:09 AM »
So given my insurance concerns, would it make more sense to start immediately, with the expectation of needing to preserve my immune system for inevitable lapses in insurance?

If you have relatively few blood draws under your belt AND your numbers are good then waiting a bit and watching the trend of your numbers is not a bad idea.  The idea is to start medicating the disease once you know that your immune system is beginning to fall prey to it.  The goal is to catch yourself mid fall rather than to preempt it.  The decision is yours to make, but as Assurbanpal points out the potential loss of the ability to pay for your meds should not be a deciding factor, the side effects should not be a deciding factor, and the toxicity of the medication is something which has yet to be proven.  Eventually you will have to begin meds unless you are one of the lucky few (which most likely you are not).  So if you need to take some time to prepare for that eventuality by all means go ahead but you will in all likelihood need them at some point.

Offline Assurbanipal

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Re: Whats your opinion? Should I start Meds?
« Reply #109 on: July 19, 2010, 07:38:34 AM »
Actually, yes, I did assume that ceasing the drugs resulted in resistance, or likely resistnace.  It was also my understanding that after ceasing drugs, CD4 dropped faster than at normal speed.  Apparently I am incorrect, and this is reassuring.  So many people have stated that "once you're on them, you should be prepared for a lifelong commitment" that I assumed they required, well, a lifelong commitment. 

There's often a lot of exaggeration of concerns as people summarize more complicated issues.

Take commitment for instance.  The real issue is to be committed to taking them religiously while you are taking them.   But somehow that gets summarized as a lifetime commitment.  They aren't the same thing.

After ceasing the drugs it appears that most people head for where they otherwise would have been had they not taken them.  That usually takes place over a period of months.  So if where you otherwise would have been is AIDS, you'd see faster than average declines on stopping.  But in the meantime you would have had the protective effect of the drugs.  And if you otherwise would have been fine...well, there's been more than one LTNP on here who started and stopped.

But this whole "lifetime commitment" is a bit of a crock anyway.  It beggars the question of commitment to what?  The drugs we have today are vastly easier to take and to tolerate than those of just 15 years ago.  If the current crop of drugs turns out to be the best there is, then in 15 years almost all of their patents will have run out and the financial issues will be largely moot.  Or, as an alternative, the drugs will get even better and we will still have a lot of worries about how to pay for them, but ...the drugs will get even better....  And when the drugs get better you can switch to the better more tolerable versions.  People do it on here all the time.  You aren't making a commitment to the current set of drugs and their costs in any event.

So...relax.   It's great that you caught things early and have time and opportunity to make this decision carefully. Don't let your anxiety over needing to make a decision become a detriment in itself.

Be well



 
5/06 VL 1M+, CD4 22, 5% , pneumonia, thrush -- O2 support 2 months, 6/06 +Kaletra/Truvada
9/06 VL 3959 CD4 297 13.5% 12/06 VL <400 CD4 350 15.2% +Pravachol
2007 VL<400, 70, 50 CD4 408-729 16.0% -19.7%
2008 VL UD CD4 468 - 538 16.7% - 24.6% Osteoporosis 11/08 doubled Pravachol, +Calcium/D
02/09 VL 100 CD4 616 23.7% 03/09 VL 130 5/09 VL 100 CD4 540 28.4% +Actonel (osteoporosis) 7/09 VL 130
8/09  new regimen Isentress/Epzicom 9/09 VL UD CD4 621 32.7% 11/09 VL UD CD4 607 26.4% swap Isentress for Prezista/Norvir 12/09 (liver and muscle issues) VL 50
2010 VL UD CD4 573-680 26.1% - 30.9% 12/10 VL 20
2011 VL UD-20 CD4 568-673 24.7%-30.6%
2012 VL UD swap Prezista/Norvir for Reyataz drop statin CD4 768-828 26.7%-30.7%

Offline Nestor

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Re: Whats your opinion? Should I start Meds?
« Reply #110 on: July 20, 2010, 08:11:29 AM »
Ann & Nestor,

Would either of you have statistics on what percent of HIV+ individuals are LTNP (or very slow progressors)  as you appear to be? From talking to people on these boards I reckon the % is very, very small.  Therefore your saying "I've been meds-free for many years and I'm just fine" is akin to the lottery winner advocating playing the lottery because he hit the jackpot.


Hi Boze,

Sorry to be late in getting back to this.  I really don't see how it matters whether someone turns out to be a non-progressor or not.  My contention is that 1. it is a mistake to start meds before necessary, and 2. meds have not been clearly shown to be necessary until around 350 t-cells or so.  The OP might have three more years or thirteen more years; it doesn't affect the argument that he or she shouldn't be pressured into starting meds at 500+ t-cells.  I don't consider myself a long-term anything, for the simple reason that I haven't had HIV "long-term".  If I have to start meds tomorrow I won't say "Damn, I'm not a ltnp after all, I might as well have started HAART back in 2005."  On the contrary, I'll be grateful for the six years I had.  On the other hand, if I believed as you do that someone not on HAART was doing major damage to his immune system, I would urge everyone to start immediately, even if he was going to be a ltnp--or rather especially if he was, because the ltnp not on meds would be doing the most damage.  

Quote
There is absolutely clear scientific evidence that delaying start of treatment to 350 vs 500 has significant impact on subsequent mortality. Whether one likes this result or finds it unconvincing is irrelevant - the numbers are real:

"From 1996 to 2006, the research team examined 8,374 HIV-infected study participants with CD4+ T-cell counts of 351-500 cells/mm3 who had never taken antiretroviral treatment and were free of AIDS-related illnesses. Thirty percent (2,473) of the study participants began taking HAART, while the remaining 70 percent (5,901) of participants deferred treatment until their CD4+ T-cell counts fell below 350 cells/mm3. The researchers found a 71 percent higher risk of death for patients who deferred treatment rather than initiating HAART, suggesting that therapy should begin at an earlier stage of HIV disease than currently recommended. A randomized clinical trial will be necessary to confirm this finding and support changes to established treatment guidelines."

http://www.sciencedaily.com/releases/2008/10/081027101353.htm


If I didn't beat a trail to my doctor's door demanding a prescription for Atripla the moment those studies were (so heavily) publicized, it was not because I have a frivolous or devil-may-care attitude towards life.  I read those studies and the articles about them very carefully.  I am astounded that you can use the words "absolutely clear evidence" to describe those studies.  I thought I had never seen anything murkier in my life.  This thread is not the place for a point-by-point discussion of those studies, but one important argument against them seems to have been made by you yourself, recently, in another thread:  

Quote
To be honest, i'm pretty skeptical of such studies. They looked at death rates of people in their 20s - which is  minuscule for health-related causes (ie not car accidents or overdoses) in the first place. So a 30% increase is still a very, very small number. The number for British Columbia is about 90 per 100,000 for ALL causes (http://www.injuryresearch.bc.ca/admin/DocUpload/3_20070202_142123Number%20of%20Deaths%20and%20Average%20Annual%20Mortality%20Rates%20by%20Sex%20&%20Age%20Group.pdf) - and I think majority are not health-related.

The reason I have a big problem with such studies is that they are used to estimate 'years to live' for HIV+ people. Since their methodology is suspect to me (ie estimating mortality increase for HV+), I am not sure I can believe their sanguine results.

How does the study you cite above not merit the same rational skepticism?  I am really tired of claims being made on the basis of percentage by which the chance of something increases.  That could mean only that out of one group of ten thousand people, four died, while out of another group of a thousand, nine died--it wouldn't make a big difference.  

By the way, the same goes for the other side.  I mention kidney damage and liver damage as reasons why I'm not eager to start meds.  A while back there was an article about how every year, in someone on certain ARVs, the chances of such damage increase by some scary-sounding percentage point.  Then it was pointed out by someone in one thread here that because the chances are pretty small to begin with, the increase aren't as terrifying as they are made out to be.  When it is reasonable for me to start HAART, I will not be frightened by those statistics, just as, now, these ones that you cite are not going to frighten me into starting before it's necessary.  


Here is what Dr. Sonnabend has to say on the topic:

This is happening with little protest in places like San Francisco where antiviral medications are now recommended for healthier HIV positive individuals for whom the benefits of treatment have not been shown to outweigh the risks.

As always, you can't beat the truth, and the truth is that for people with more than 350 CD4 lymphocytes, the best time to start treatment is not known.    This may seem surprising as potent antiretroviral drugs have been available for fifteen years.

We have not yet done the kind of study that would most reliably provide the information those HIV positive individuals with higher CD4 numbers and their doctors need to make the best decisions about when to start treatment.


My own doctor's philosophy, for what it's worth, is this:

1. Above 500, don't start.
2. Between 350 and 500, we can discuss starting.
3. At 350, definitely start.  

Boze writes:

Quote
It all comes down to probabilities. If one thinks he has a 20-30% chance of being an LNTP - then maybe it makes sense to wait. But since that % is much, much smaller, I think delaying treatment while hoping to find that your CD4 magicaly bounce from 350 to 600 is naive.

ActiveHIV began this thread with the following information: CD4 of 557, VL of 2,300.  If he had said that he had steadily declined over the past six lab tests and was now at around 350, the above would be a relevant argument.  I do not see how someone who, I think, has only had two sets of labs, and who is still above the 500 mark, can be described as "delaying treatment while hoping to find that his CD4 will magically bounce from 350 to 500."  

Later on you repeat the theme:  

Quote
2) The only way to tell if you are LTNP-LTSP is to actually let your cd4 count drop to the level (ie 350) that's proven to be more dangerous than an earlier start and confirming that your cd4's don't bounce.


Now it's proven?  I'm serious when I say that perhaps we should start a new thread going through those studies in detail and trying to sort out the implications.  I read them and I said that I would sooner decide when to start HAART based on the advice of astrologers than based on such a study; you read it and you saw absolute clarity and proof.  And yet we read the same study.  

On the other hand, look at this, from Sean Strub, here at poz.com, less than a week ago:  

"I was diagnosed with "profound" osteoporosis, attributed in some significant part to tenofovir, known as Viread, the powerful anti-retroviral drug I was taking (and which is also found in Gilead's Truvada and Atripla).
 
Six years ago, when I started Viread, I was told nothing of this possible side effect.  While there was already some data indicating some risk, most community clinicians and patient advocates had not been informed about it.

HIV itself, as well as a number of other anti-retroviral AIDS drugs may also  contribute to bone loss, but there is growing evidence which points to tenofovir (found in Viread, Truvada and Atripla) as a particularly intense demineralizer.  


Notice this is not from AZT--this is from something in Atripla, which appears still to be the treatment of choice for newly diagnosed people.  So for me, to start meds before they were necessary, I would need some truly clear risk of non-treatment that would not only equal but outweigh this and other known risks of treatment.  

I do not blame you for being concerned about the possible damage uncontrolled HIV might be doing inside the system of someone like me.  I'm concerned about it too.  But I'm puzzled by what looks to me like an imbalance: your concern about that is not counter-balanced by a concern about the damage that forty years of HAART almost certainly would do.  Perhaps it boils down to a different estimation of time.  You keep saying "you'll have to start HAART anyway" as if starting now or five years from now were the same thing.  For me those five years would be very valuable.  

And now, to get back to the OP, activehiv said:

Quote
Thanks everyone for your thoughts.  I still dont know what to do.  I'm kinda leaning on waiting for the next set of numbers.  Kinda on account on what happen to my bf.  He just started Aprila and broke out with a rash.  The docs said it was normal but again I don't know what kind of side affects I will have.  As far as why my doc said I should start meds, he wants my vl to be undetectable.  I'll keep you all updated.  I have an appointment scheduled for the end of the month so I have some time to decide if I'm gonna go through with starting treatment

I'm sorry, but as far as I'm concerned, the sentence in bold renders suspect anything further your doctor has to say on the matter.  Considering the fact that, aside from a few elite controllers, almost nobody not on HAART is undetectable, that statement is tantamount to saying that everyone should be on HAART.  You might as well have had a CD4 count of 900.  By the way, your VL is lower than mine has ever been.  The first time I got tested I had a VL of around 9,000. and they told me that that was fantastic.  

Summer 2004--became HIV+
Dec. 2005--found out

Date          CD4    %       VL
Jan. '06    725    25      9,097
Nov. '06    671    34     52,202
Apr. '07    553    30      24,270
Sept. '07  685    27       4,849
Jan. '08    825    29       4,749
Mar. '08    751    30     16,026
Aug. '08    653    30       3,108
Oct. '08     819    28     10,046
Jan '09      547    31     13,000
May '09     645   25        6,478
Aug. '09    688   30      19,571
Nov. '09     641    27       9,598
Feb. '10     638    27       4,480
May '10      687      9    799,000 (CMV)
July '10      600     21      31,000
Nov '10      682     24     15,000
June '11     563    23     210,000 (blasto)
July  '11      530    22      39,000
Aug '11      677     22      21,000
Sept. '12    747     15      14,000

Offline Ann

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Re: Whats your opinion? Should I start Meds?
« Reply #111 on: July 20, 2010, 10:51:31 AM »
Thank you Nestor, very well said.
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Offline max123

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Re: Whats your opinion? Should I start Meds?
« Reply #112 on: July 20, 2010, 12:38:07 PM »
Hi Boze,

Sorry to be late in getting back to this.  I really don't see how it matters whether someone turns out to be a non-progressor or not.  My contention is that 1. it is a mistake to start meds before necessary, and 2. meds have not been clearly shown to be necessary until around 350 t-cells or so.  The OP might have three more years or thirteen more years; it doesn't affect the argument that he or she shouldn't be pressured into starting meds at 500+ t-cells.  I don't consider myself a long-term anything, for the simple reason that I haven't had HIV "long-term".  If I have to start meds tomorrow I won't say "Damn, I'm not a ltnp after all, I might as well have started HAART back in 2005."  On the contrary, I'll be grateful for the six years I had.  On the other hand, if I believed as you do that someone not on HAART was doing major damage to his immune system, I would urge everyone to start immediately, even if he was going to be a ltnp--or rather especially if he was, because the ltnp not on meds would be doing the most damage.  

If I didn't beat a trail to my doctor's door demanding a prescription for Atripla the moment those studies were (so heavily) publicized, it was not because I have a frivolous or devil-may-care attitude towards life.  I read those studies and the articles about them very carefully.  I am astounded that you can use the words "absolutely clear evidence" to describe those studies.  I thought I had never seen anything murkier in my life.  This thread is not the place for a point-by-point discussion of those studies, but one important argument against them seems to have been made by you yourself, recently, in another thread:  

How does the study you cite above not merit the same rational skepticism?  I am really tired of claims being made on the basis of percentage by which the chance of something increases.  That could mean only that out of one group of ten thousand people, four died, while out of another group of a thousand, nine died--it wouldn't make a big difference.  

By the way, the same goes for the other side.  I mention kidney damage and liver damage as reasons why I'm not eager to start meds.  A while back there was an article about how every year, in someone on certain ARVs, the chances of such damage increase by some scary-sounding percentage point.  Then it was pointed out by someone in one thread here that because the chances are pretty small to begin with, the increase aren't as terrifying as they are made out to be.  When it is reasonable for me to start HAART, I will not be frightened by those statistics, just as, now, these ones that you cite are not going to frighten me into starting before it's necessary.  


Here is what Dr. Sonnabend has to say on the topic:

This is happening with little protest in places like San Francisco where antiviral medications are now recommended for healthier HIV positive individuals for whom the benefits of treatment have not been shown to outweigh the risks.

As always, you can't beat the truth, and the truth is that for people with more than 350 CD4 lymphocytes, the best time to start treatment is not known.    This may seem surprising as potent antiretroviral drugs have been available for fifteen years.

We have not yet done the kind of study that would most reliably provide the information those HIV positive individuals with higher CD4 numbers and their doctors need to make the best decisions about when to start treatment.


My own doctor's philosophy, for what it's worth, is this:

1. Above 500, don't start.
2. Between 350 and 500, we can discuss starting.
3. At 350, definitely start.  

Boze writes:

ActiveHIV began this thread with the following information: CD4 of 557, VL of 2,300.  If he had said that he had steadily declined over the past six lab tests and was now at around 350, the above would be a relevant argument.  I do not see how someone who, I think, has only had two sets of labs, and who is still above the 500 mark, can be described as "delaying treatment while hoping to find that his CD4 will magically bounce from 350 to 500."  

Later on you repeat the theme:  

Now it's proven?  I'm serious when I say that perhaps we should start a new thread going through those studies in detail and trying to sort out the implications.  I read them and I said that I would sooner decide when to start HAART based on the advice of astrologers than based on such a study; you read it and you saw absolute clarity and proof.  And yet we read the same study.  

On the other hand, look at this, from Sean Strub, here at poz.com, less than a week ago:  

"I was diagnosed with "profound" osteoporosis, attributed in some significant part to tenofovir, known as Viread, the powerful anti-retroviral drug I was taking (and which is also found in Gilead's Truvada and Atripla).
 
Six years ago, when I started Viread, I was told nothing of this possible side effect.  While there was already some data indicating some risk, most community clinicians and patient advocates had not been informed about it.

HIV itself, as well as a number of other anti-retroviral AIDS drugs may also  contribute to bone loss, but there is growing evidence which points to tenofovir (found in Viread, Truvada and Atripla) as a particularly intense demineralizer.  


Notice this is not from AZT--this is from something in Atripla, which appears still to be the treatment of choice for newly diagnosed people.  So for me, to start meds before they were necessary, I would need some truly clear risk of non-treatment that would not only equal but outweigh this and other known risks of treatment.  

I do not blame you for being concerned about the possible damage uncontrolled HIV might be doing inside the system of someone like me.  I'm concerned about it too.  But I'm puzzled by what looks to me like an imbalance: your concern about that is not counter-balanced by a concern about the damage that forty years of HAART almost certainly would do.  Perhaps it boils down to a different estimation of time.  You keep saying "you'll have to start HAART anyway" as if starting now or five years from now were the same thing.  For me those five years would be very valuable.  

And now, to get back to the OP, activehiv said:

I'm sorry, but as far as I'm concerned, the sentence in bold renders suspect anything further your doctor has to say on the matter.  Considering the fact that, aside from a few elite controllers, almost nobody not on HAART is undetectable, that statement is tantamount to saying that everyone should be on HAART.  You might as well have had a CD4 count of 900.  By the way, your VL is lower than mine has ever been.  The first time I got tested I had a VL of around 9,000. and they told me that that was fantastic.  



good points vehemently defended, nestor... albethey one sidedly.

yes, hiv meds can definitely have side effects that may be known, unanticipated and, or unknown, e.g. the osteoporosis example you mentioned. what you failed to mention however is that osteoporosis is a treatable disease. so in this case, it begs the question of did the benefit of hiv treatment outweigh the side effect in the noted patient?

your quote: "I'm sorry, but as far as I'm concerned, the sentence in bold renders suspect anything further your doctor has to say on the matter.  Considering the fact that, aside from a few elite controllers, almost nobody not on HAART is undetectable, that statement is tantamount to saying that everyone should be on HAART."

umm...you are obviously aware of the potentially changing face of hiv medical management. i presume you have read what dr. gallant and others have suggested regarding the subject of potentially everyone hiv poz being on haart whether their cd4s are >500 or not. you are also obviously aware of the research illustrating the potential effects of untreated hiv on the heart, liver, kidneys, brain & central nervous system, eyes, cancers, etc.  as you likely also know, all of this is exactly the point of the smart study and what the results of several other completed studies are currently pointing to. accordingly, to advise the op to from this point be suspicious about the advice from his doctor (which you are not), based upon your subjective opinion which is limited by your lack of specialization in current hiv medicine comes off as frankly, a little strong. many docs these days are pushing for earlier medical management at cd4s >500, based on the limited study results currently out there, not just the op's. currently it's a crap shoot whether they're right or whether they're wrong. we just don't know.

the bottom line is that all of us (myself included) that are currently considering the meds issue in the potentially changing face of hiv medical management are in a real catch 22 situation...you're damned if you do & damned if you don't. imho, until we do have all the answers regarding when is the most effective time to start meds, maybe each case should be evaluated by the patient & his/her doc, on an individual basis, not simply appointed a blanket yes or no. just a thought...

max
1/86 - 6/08 (annually): neg elisa
7/09: pos elisa/pos wb
8/09: cd4 560, cd4% 35, vl 13,050
12/09: cd4 568, cd4% 33, vl 2,690
4/10: cd4 557, cd4% 29.3, vl 6,440
7/10: cd4 562, cd4% 29.6, vl 3,780

Offline Nestor

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Re: Whats your opinion? Should I start Meds?
« Reply #113 on: July 20, 2010, 01:36:11 PM »
good points vehemently defended, nestor... albethey one sidedly.



That's the nature of a discussion.  If I were writing an article I would feel bound to present both sides of the question.  Since Boze and others have already done so good a job of presenting the "other side", I need only present the side I happen to find most convincing. 



yes, hiv meds can definitely have side effects that may be known, unanticipated and, or unknown, e.g. the osteoporosis example you mentioned. what you failed to mention however is that osteoporosis is a treatable disease. so in this case, it begs the question of did the benefit of hiv treatment outweigh the side effect in the noted patient?


That depends.  If was near full-blown AIDS, then yes, it clearly did.  I too would rather be alive with osteoporosis than dead.  That is why none of those things would prevent me from starting meds if I felt it necessary.  But obviously, I don't feel the benefit clearly outweighs the risks in the case of someone who, like the OP, has more than 500 t-cells and a really low VL in addition. 


your quote: "I'm sorry, but as far as I'm concerned, the sentence in bold renders suspect anything further your doctor has to say on the matter.  Considering the fact that, aside from a few elite controllers, almost nobody not on HAART is undetectable, that statement is tantamount to saying that everyone should be on HAART."

umm...you are obviously aware of the potentially changing face of hiv medical management. i presume you have read what dr. gallant and others have suggested regarding the subject of potentially everyone hiv poz being on haart whether their cd4s are >500 or not. you are also obviously aware of the research illustrating the potential effects of untreated hiv on the heart, liver, kidneys, brain & central nervous system, eyes, cancers, etc.  as you likely also know, all of this is exactly the point of the smart study and what the results of several other completed studies are currently pointing to. accordingly, to advise the op to from this point be suspicious about the advice from his doctor (which you are not), based upon your subjective opinion which is limited by your lack of specialization in current hiv medicine comes off as frankly, a little strong. many docs these days are pushing for earlier medical management at cd4s >500, based on the limited study results currently out there, not just the op's. currently it's a crap shoot whether they're right or whether they're wrong. we just don't know.

max


Yes.  That's just it--that was the point of Dr. Sonnabend's article.  We simply do not know.  I am gambling by not being on meds as long as I am. Boze is gambling by committing himself to possibly many more years of meds than he perhaps needed.  A doctor I would admire would be one who said "Look, we don't know, here are the arguments in one direction, here are the arguments in the other, you can look at these articles if you like.  I happen to be of the instinct"-- (for I think that's what we are dealing with here, instincts) --"that it's better for everyone to start immediately, and I would like you to consider starting."   However, the OP's doctor doesn't appear to have done this.  Look at the first statement: 

Quote
My doctor said that the standard has changed and that I should start meds

He presents his (extremist) view as if it were the unchallenged voice of the whole medical establishment.  Then, only when questioned by the OP about his reasons, he says something that on the surface sounds as if it is personally considering the situation of the OP (I want you to be undetectable) but in fact means little more than "I would push meds on anyone who came through my door, it could be an 18-year-old with a thousand t-cells, doesn't matter."  That quote has been bothering me since I first read it.  I want a doctor who will base a decision on me, not on my numbers.    Here is more Dr. Sonnabend: 

A physician in San Francisco who recommended that all HIV infected individuals should start treatment immediately was reported to have said:

 "If I'm wrong, we'll start people [on treatment] a couple years earlier than we otherwise would. But if I'm right and we don't start early, there's no going back,"

  Others who are concerned about drug side effects might feel that more may be at stake for HIV positive individuals with higher CD4 numbers.  This also includes the possibility that fewer options may be available when treatment is definitely known to be needed.

 This doctor is also reported to have said:

"The old paradigm was that drugs are toxic so we should wait as long as possible. The new paradigm is that while today's drugs are not totally benign, they are less toxic than the virus."

"The" paradigm?    Is it not misleading to give an impression that his views on drug toxicities represent a consensus?   

 How on earth can the longer term toxicities of the newer drugs be known? 

...

Empowerment means that HIV positive individuals make their own decisions to start or to defer treatment.  They have the right to clear and honest information to enable them to make this decision.  Those with higher CD4 counts have the right to know that there still is uncertainty about when it is best to start treatment.

...

The very antithesis of self empowerment is to allow researchers to persuade us with evidence of inferior quality, such as their personal opinions, presented as if there were a consensus, or with the results of embarrassingly uninterpretable studies such as NA-ACCORD so often used to justify earlier starts to treatment.


I thought of Sonnabend's reaction to the "paradigm" business when I read that bit about how "the standard has changed." 


the bottom line is that all of us (myself included) that are currently considering the meds issue in the potentially changing face of hiv medical management are in a real catch 22 situation...you're damned if you do & damned if you don't. imho, until we do have all the answers regarding when is the most effective time to start meds, maybe each case should be evaluated by the patient & his/her doc, on an individual basis, not simply appointed a blanket yes or no. just a thought...

max


Yes--I agree with all of that completely.  That is why it is so vital for us to have--to insist on having--doctors who arm us with information and give us the power to make our choices--not try to pressure us into irrevocable decisions by creating the illusion that guesswork is proof and that an opinion is a consensus.  But to end on an optimistic note, I don't think we are necessarily damned if we do and damned if we don't.  I think there is a lot of reason for hope.  I know one man who's had HIV for about 25 years and is still not on meds: he looks great, works two jobs, and has fewer health problems that the average negative person of his age.  There are also lots of people who have been on meds for years and are thriving.  Just something to keep in mind when terrified either by med or by non-meds.  We could set a date: Boze and Ann and you and I will all come back here exactly ten (or twenty?) years from now and compare the state of our health and what we think retrospectively of our respective choices.  But we'll probably all be fine. 
Summer 2004--became HIV+
Dec. 2005--found out

Date          CD4    %       VL
Jan. '06    725    25      9,097
Nov. '06    671    34     52,202
Apr. '07    553    30      24,270
Sept. '07  685    27       4,849
Jan. '08    825    29       4,749
Mar. '08    751    30     16,026
Aug. '08    653    30       3,108
Oct. '08     819    28     10,046
Jan '09      547    31     13,000
May '09     645   25        6,478
Aug. '09    688   30      19,571
Nov. '09     641    27       9,598
Feb. '10     638    27       4,480
May '10      687      9    799,000 (CMV)
July '10      600     21      31,000
Nov '10      682     24     15,000
June '11     563    23     210,000 (blasto)
July  '11      530    22      39,000
Aug '11      677     22      21,000
Sept. '12    747     15      14,000

Offline eric48

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Re: Whats your opinion? Should I start Meds?
« Reply #114 on: July 20, 2010, 03:13:47 PM »


the bottom line is that all of us (myself included) that are currently considering the meds issue in the potentially changing face of hiv medical management are in a real catch 22 situation..

Hi Max 123,

Your's is an interesting one and a case to show that focusing on CD4 count ONLY might be a mistake. To me you are lucky enough to have a low VL and relatively hight % . Me, I had a slghtly lower GD4 count than you but a lower % and much higher VL. If I had been in you case, I might have considered waiting a bit... I am still at initiation stage of my meds. I have only suffered very modest SE and I HOPE that they are on the decrease. I had a 18% that what make me think that I was only 1 or 2 years away from NEEDING the meds. In which case, why wait ? In your case the % still high (I some how envy you, there) and there is no rush...

Cheers! Eric
NVP/ABC/3TC/... UD; CD4 > 1000; CD4/CD8 ~ 2.0   safety stock : 3 months (2013: FOTO= 5d. ON 2d. OFF ; 2014: NCT02157311 = 4d. ON, 3d. OFF)

Offline max123

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Re: Whats your opinion? Should I start Meds?
« Reply #115 on: July 21, 2010, 10:26:12 PM »

We could set a date: Boze and Ann and you and I will all come back here exactly ten (or twenty?) years from now and compare the state of our health and what we think retrospectively of our respective choices.  But we'll probably all be fine. 

it's a date... ;)
1/86 - 6/08 (annually): neg elisa
7/09: pos elisa/pos wb
8/09: cd4 560, cd4% 35, vl 13,050
12/09: cd4 568, cd4% 33, vl 2,690
4/10: cd4 557, cd4% 29.3, vl 6,440
7/10: cd4 562, cd4% 29.6, vl 3,780

Offline Boze

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Re: Whats your opinion? Should I start Meds?
« Reply #116 on: July 22, 2010, 03:22:25 PM »
Sorry, Nestor, i will not quote as it's too much of a hassle with a large post. But i'll go over a few issues you raised.

1) I didn't actually mean to advice the OP to start treatment immediately. I simply wanted to let him know that a lot of top doctors in the field recommend starting early (ie with any cd4 count) and went over the reasons.

1) I guess our ultimate disagreement is rooted in the belief on what is more damaging to the body

  a) The HIV virus (or attendant inflammation) even at relatively high CD4s (400-600)
  b) HAART

We obviously have access to same research studies - so the issue is interpretation. To me the 70% increase in mortality for those who started HAART at 350 vs 500 is sufficient evidence. What you have to keep in mind is that the study did not talk about issues that people had without dying. So I am extrapolating increased mortality (which admittedly probably happened to a small % of the cohort) to various other diseases.

3) I mentioned being skeptical of such study as a way to come up with a life expectancy prognosis for HIV+ vs HIV-. But that's because we don't know what living on HAART for 20 years is like. But to me the conclusion that I quoted is still very relevant with respect to decision when to start.

4) You mentioned Sean Strub's unfortunate experience with osteoporosis as an example of HAART side-effect. I am not sure I agree with this conclusion. Sean has actually live with HIV for a very long time, so there is a good chance that it could be the combination of Truvada and HIV that has contributed to this. As he wrote in his blog post

"Overall, bone fractures amongst people with HIV are increasing at an astonishing rate.  The HOPS study, as reported by AIDSmeds.com's Tim Horn, showed that from 2000 to 2008, people with HIV had seven times the rate of fractures requiring hospitalization and three times the rate of fractures treated on an outpatient basis, as compared to a similar HIV negative cohort. Three quarters of the HIV positive arm of their study were also on anti-retroviral therapy.  "

The more general point I am making is that we mostly read about people who have had HIV for a while and are now on HAART and have health issues still. So it's difficult to separate whether those issues are a result of HIV being unchecked for years OR HAART medication now.   My hunch is that it could be more former than latter - but it's only a hunch.



==========
Aug08 - Seroconversion
Mar10 - Diagnosis; cd4 690 - VL 19,000
Apr10 - cd4 600
May10 - VL 4,500
Jun10 - started Atripla ; VL 113
Jul 10 - UD vl, CD4 590
Aug 10 - UD, CD4 810, 52%
Nov 10 - UD, CD4 980

Offline Rev. Moon

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Re: Whats your opinion? Should I start Meds?
« Reply #117 on: July 22, 2010, 04:13:35 PM »
Sorry, Nestor, i will not quote as it's too much of a hassle with a large post.

Welcome to Nestor's "three page reply" world.  They are pain to view on an iPad as they take the entire screen.

And there is another member out there who specializes in extra-long and winding responses.  But they shall remain unnamed.
"I have tried hard--but life is difficult, and I am a very useless person. I can hardly be said to have an independent existence. I was just a screw or a cog in the great machine I called life, and when I dropped out of it I found I was of no use anywhere else."

Offline max123

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Re: Whats your opinion? Should I start Meds?
« Reply #118 on: July 23, 2010, 07:42:36 PM »
Hi Max 123,

Your's is an interesting one and a case to show that focusing on CD4 count ONLY might be a mistake. To me you are lucky enough to have a low VL and relatively hight % . Me, I had a slghtly lower GD4 count than you but a lower % and much higher VL. If I had been in you case, I might have considered waiting a bit... I am still at initiation stage of my meds. I have only suffered very modest SE and I HOPE that they are on the decrease. I had a 18% that what make me think that I was only 1 or 2 years away from NEEDING the meds. In which case, why wait ? In your case the % still high (I some how envy you, there) and there is no rush...

Cheers! Eric

hi eric,

agreed, all of our numbers need to be looked at simultaneously and over time, safety permitting. yeah, i've pretty much been doing the monitoring thing for the past year. my docs are a little concerned about my gradual cd4% decline and the upcoming stressors of med school. they've recommended that i start haart now. given all currently going on with the potentially changing face of hiv med management, i'm currently weighing it all out & trying to make the best decision.
1/86 - 6/08 (annually): neg elisa
7/09: pos elisa/pos wb
8/09: cd4 560, cd4% 35, vl 13,050
12/09: cd4 568, cd4% 33, vl 2,690
4/10: cd4 557, cd4% 29.3, vl 6,440
7/10: cd4 562, cd4% 29.6, vl 3,780

Offline natthai

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Re: Whats your opinion? Should I start Meds?
« Reply #119 on: September 09, 2010, 03:14:15 PM »

Nonetheless, in the US they went ahead and changed the guidelines to treat at 350-500. In Europe we stuck to treat at 350. The study to look at treatment at 500 v 350 is enrolling, it's important, is called START

START study
http://insight.ccbr.umn.edu/start/

Community statement on START
http://i-base.info/home/community-statement-supporting-start-trial/

Hi guys, I was recently diagnosed earlier this year and I have been reading this forum sporadically. I just got my 3rd lab results back a few weeks ago. My doctor is overseeing the START study in my city. I was diagnosed at a Red Cross Research Center in S.E. Asia and since my diagnosis, the possibility of enrolling in the START study has been offered to me several times. I have the study protocol in front of me now and reading it over I am not sure what to do.

Each time I get my lab results I am given a different reason why I should enroll. My numbers have always been in the high end of normal so far and every time I ask about why this is, I don't get a good answer but instead I get a pitch as to why it is still a good idea to get into the study.

I would like to know what you guys think, considering my lab results, of the wisdom of submitting my health to medical research at this time.

I have done a TON of research and I have to admit my thinking is very much in line with Ann and some of the others on this issue however I still have to get back to my Doctor with an answer so any advice, experience, hindsight, rationale, would be greatly appreciated.
Infection date: February 14, 2010 (yeah really)
08/03/2010 - CD4 621 (27%) VL 72,250
25/03/2010 - CD4 981 (28%) VL 122,719 <-started anti-oxidants (ABCDE, Se, ALA, NAC)
11/08/2010 - CD4 1,365 (31%) VL 5,451

Offline Ann

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Re: Whats your opinion? Should I start Meds?
« Reply #120 on: September 09, 2010, 03:33:39 PM »
Wow, Natthai, those are some fantastic numbers so early in your infection.

While I think the START study is a very important one, with numbers like those I too would be hesitating and I really don't think I would enrol if it were me. You could very well be a LTNP or LTSP.
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Offline newt

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Re: Whats your opinion? Should I start Meds?
« Reply #121 on: September 09, 2010, 05:20:43 PM »
Some points

To Naathi, I wouldn't enroll with a CD4 of 1,000+ or even 800. That's very good, normal even. Would be different if you had a CD4 close to 500, there may be merit then.

More generally, was previously said:


Quote
  a) The HIV virus (or attendant inflammation) even at relatively high CD4s (400-600)

Strictly speaking inflammation here means immune activation, and no-one knows if this is good or bad with HIV. It is generally assumed it is bad, but it may be good, ie protective. Immune activation in HIV may contribute to a resilient defense by the body against the virus, albeit with some cut-off point where it becomes damaging, and early treatment may blunt this response. This is the counter-case, and we need a study to settle the question (which may turn out to be START - the study looking at starting treatment or not with higher CD4 counts).

The reason to start (and continue indefinately) treatment is to stop viral replication and therefore prevent and reverse a known-to-be bad loss of CD4 cells, not to prevent immune activation. The arguments on early treatment to preserve immune function at CD4 counts over 350 are unsettled (hence START again).

Which raises an important argument against treatment at high CD4 counts, ie willingness to participate in the treatment project day in day out. No-one wants to take meds day in day out, and continuous access can be an issue. Which is to say, don't fret if you decide to wait a bit and not be so gung-ho. Even at a CD4 count of 200 treatment is effective, even if the risks of ill health are moderately greater leaving it to then than starting at eg 350. In the recent studies on treatment by CD4 count the difference between 350 and higher was marginal, between 200 and 350 significant.

And yes, modern meds do have side effects, even if they are not the rapid fat loss/gain, pain in the feet and Niagra Falls squits of old.

- matt


Edited for spelling
« Last Edit: September 09, 2010, 05:24:33 PM by newt »
"The object is to be a well patient, not a good patient"

Offline eric48

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Re: Whats your opinion? Should I start Meds?
« Reply #122 on: September 09, 2010, 05:32:23 PM »
Amazingly good numbers. I would side with Ann...

Cheers!  Eric
NVP/ABC/3TC/... UD; CD4 > 1000; CD4/CD8 ~ 2.0   safety stock : 3 months (2013: FOTO= 5d. ON 2d. OFF ; 2014: NCT02157311 = 4d. ON, 3d. OFF)

Offline natthai

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Re: Whats your opinion? Should I start Meds?
« Reply #123 on: September 10, 2010, 04:52:49 AM »
I have the START study protocol in front of me and here and there are a few excerpts which I found interesting:

Document is called: Insight protocol 001: START A.7
Version 1.1, 17 September 2009

"We want to find out whether it is better for people with HIV infection to start taking medicines as soon as they know they have HIV or to wait until current guidelines recommend that they start HIV medicines."

"The University of Minnesota, the sponsor of this research, gets royalties (payments) from the use of abacavvir, one of the HIV medicines that can be used in this study."

"We will also study whether the cost of medical care, general health, and satisfaction with life differs between the deferred and the early group. And, we will study whether the virus changes and becomes resistant to some HIV medicines."

"We plan to enroll 4000 people with HIV infection and follow them for 3 to 6 years."

So there are a few concerns here:

1. This study is funded by a pharmaceutical company.

2. One of the goals of the study, aside from the main goal of determining when is the best time to start, is that they are studying whether the virus will develop mutation resistance during the course of the study (3-6 years). I noticed that several posters above cited resistant mutation as primarily arising from non-adherence, missed doses etc.

According to my reading of this, they must have a hypothesis to suspect that resistance can happen with perfect adherence. In this study, since they will be administering the medicine and tracking the progress, they will be controlling adherence and yet one of the states goals is to study resistance. So, although this is not evidence, it would suggest that starting treatment earlier, even with perfect adherence, resistant mutation maybe possible within 3 to 6 years. This would seem to be a reason to wait until treatment is currently indicated as opposed to starting it immediately. What are your thoughts on this, especially anyone taking abacavir since it is the only one specifically mentioned.
Infection date: February 14, 2010 (yeah really)
08/03/2010 - CD4 621 (27%) VL 72,250
25/03/2010 - CD4 981 (28%) VL 122,719 <-started anti-oxidants (ABCDE, Se, ALA, NAC)
11/08/2010 - CD4 1,365 (31%) VL 5,451

Offline Hellraiser

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Re: Whats your opinion? Should I start Meds?
« Reply #124 on: September 10, 2010, 12:58:38 PM »
According to my reading of this, they must have a hypothesis to suspect that resistance can happen with perfect adherence. In this study, since they will be administering the medicine and tracking the progress, they will be controlling adherence and yet one of the states goals is to study resistance. So, although this is not evidence, it would suggest that starting treatment earlier, even with perfect adherence, resistant mutation maybe possible within 3 to 6 years. This would seem to be a reason to wait until treatment is currently indicated as opposed to starting it immediately. What are your thoughts on this, especially anyone taking abacavir since it is the only one specifically mentioned.

Or instead of assuming that resistance is impossible while remaining completely adherent they need to make sure that everyone in their study is completely adherent and does not develop any resistance thereby bolstering that hypothesis.  You're making a shaky logical deduction there buddy.

As for pharmaceutical funding, well yeah.  If the study comes out and says "earlier treatment is better" then yes more drugs will be sold.  Without the study that statement could never happen.  Essentially this is the potential for a lot of money to be made, but I doubt the folks selling the drugs have the scientists in their pockets with an endgoal in mind.  I'm a pretty avid conspiracy theorist and that's a bit much even for me.

Offline natthai

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Re: Whats your opinion? Should I start Meds?
« Reply #125 on: September 10, 2010, 01:53:31 PM »
Or instead of assuming that resistance is impossible while remaining completely adherent they need to make sure that everyone in their study is completely adherent and does not develop any resistance thereby bolstering that hypothesis.  You're making a shaky logical deduction there buddy.

As for pharmaceutical funding, well yeah.  If the study comes out and says "earlier treatment is better" then yes more drugs will be sold.  Without the study that statement could never happen.  Essentially this is the potential for a lot of money to be made, but I doubt the folks selling the drugs have the scientists in their pockets with an endgoal in mind.  I'm a pretty avid conspiracy theorist and that's a bit much even for me.

The FDA reported a while ago that when a pharmaceutical company funds a safety or efficacy of a new drug coming to market, the odds that the results of the study will produce favorable safety profile are increased 5 fold over that of a study conducted by impartial investigators with no financial compensation (such as a study funded entirely but the NIH). This is a completely obvious conclusion. This is also why all of the major medical journals require that the investigators of a study have to declare any financial ties they have to the company who's product is being studied. Researchers who do not, are said to declare that they have no conflict of interest.

There is nothing conspiratorial or theoretical in designing a good empirical study. Each stakeholder has a different interest and it is the job of the designer of the study to remove any potential bias, including financial. Ideally, you want to design studies that are impartial and free from as many biases as possible and financial considerations are especially important in a trial such as this one that might be used to shape future policy or treatment recommendations.

Pharmaceutical companies absolutely want to generate profit, that is their function and they are inherently biased. There is no conpiracy in this. In fact it is desirable in a market system as this is where innovation comes from, However it is the function of researchers to conduct scientifically rigorous, empirically sound and impartial studies (free from any bias including financial incentive).

Concerning your first point, they specifically state that they "will study if the virus changes and becomes resistant to some HIV medicines". This is not a protocol restraint to ensure the validity of the main research aim, instead it is outlined in the document as a separate goal of the study.

What I am more interested in discussing here is hearing the opinion of others regarding the possibility/likely-hood of the current HAART treatments developing resistant mutations even in the absence of adherence issues. In other words, is it possible/likely that the virus can mutate to a form resistant to current ARVs given a high degree of adherence? Have any members experienced this?

If so then this would be a potential factor to consider when deciding when to start treatment. I'm not sure they have a complete answer yet otherwise they would not state this as a separate study goal.
Infection date: February 14, 2010 (yeah really)
08/03/2010 - CD4 621 (27%) VL 72,250
25/03/2010 - CD4 981 (28%) VL 122,719 <-started anti-oxidants (ABCDE, Se, ALA, NAC)
11/08/2010 - CD4 1,365 (31%) VL 5,451

Offline newt

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Re: Whats your opinion? Should I start Meds?
« Reply #126 on: September 10, 2010, 04:18:06 PM »
1. This study is funded by a pharmaceutical company.

Well to a small degree cos of the royalties. I would want equal favour to be given to the competitor, tenofovir. I would want standard of care and nothing else, which means NRTIs of your choice. Otherwise the results could be (slightly) skewed. In the UK arm this is not a possibility (cos we have state funding or ARVs).

This may turn out to be a proper and unimportant disclosure of conflict of interest. Solution: ask how drugs will be selected in the study and take a view.

2. One of the goals of the study, aside from the main goal of determining when is the best time to start, is that they are studying whether the virus will develop mutation resistance during the course of the study (3-6 years).

This is standard. It  does not mean they expect resistance to arise for unusual reasons, eg when people have good adherence. That it is included is an example of good study design (cos it's important). Also, if people who start early (or later) get more (less) resistance, this may in itself be an important finding.

Hope this helps

- matt
"The object is to be a well patient, not a good patient"

Offline wooffman99

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Re: Whats your opinion? Should I start Meds?
« Reply #127 on: September 10, 2010, 11:08:33 PM »
I also have the START consent papers in front of me. I have been debating with myself all week whether or not to get into the study.  Its a 50/50 chance whether I would start meds right away or be in the 50% that begins with CD4+ <350. Part of me would like to begin meds now and part of me is very afraid to do anything. I also have thought about getting involved trying to make "lemonade" but is this a good enough reason?
01-10 HIV+
CD4 680, VL 8500
06-10
cd4 650, VL 2100
01-11
CD4 530, VL 27,000
06-11
CD4 580, CD4% 26, VL 47,000
Started Tuvada, Reyataz/Norvir
09-11
CD4 480, CD4% 28, VL 110
Switched to Complera 05-12
01-13
CD4 600 VL ND

Offline natthai

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Re: Whats your opinion? Should I start Meds?
« Reply #128 on: September 11, 2010, 01:16:02 AM »
Well to a small degree cos of the royalties. I would want equal favour to be given to the competitor, tenofovir. I would want standard of care and nothing else, which means NRTIs of your choice. Otherwise the results could be (slightly) skewed. In the UK arm this is not a possibility (cos we have state funding or ARVs).

This may turn out to be a proper and unimportant disclosure of conflict of interest. Solution: ask how drugs will be selected in the study and take a view.

Excellent point, you have a sharp eye! I think more details are needed as the clause is pretty vague. The statement itself might be the conflict of interest statement. From this outline it is not at all clear the exact methodology they will use in the study and why this particular drug was mentioned. I think without further details it is hard to say. Your solution is also excellent, I will ask.

2. One of the goals of the study, aside from the main goal of determining when is the best time to start, is that they are studying whether the virus will develop mutation resistance during the course of the study (3-6 years).

This is standard. It  does not mean they expect resistance to arise for unusual reasons, eg when people have good adherence. That it is included is an example of good study design (cos it's important). Also, if people who start early (or later) get more (less) resistance, this may in itself be an important finding.

Yes I agree, the statement does not indicate if they expect. I should remove the word expect and 'replace' it with 'possible'. Since they specifically state it that would seem to indicates that it is at lease a possible and they want to study it. I would like to hear from some long term HAART patients on this one. Is it possible to develop mutations resistant to the current ARVs on the market today even with complete adherence? If so, is it likely? What other factors are involved?

Thanks Matt your input was very helpful.
Infection date: February 14, 2010 (yeah really)
08/03/2010 - CD4 621 (27%) VL 72,250
25/03/2010 - CD4 981 (28%) VL 122,719 <-started anti-oxidants (ABCDE, Se, ALA, NAC)
11/08/2010 - CD4 1,365 (31%) VL 5,451

Offline natthai

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Re: Whats your opinion? Should I start Meds?
« Reply #129 on: September 11, 2010, 02:06:17 AM »
I also have the START consent papers in front of me. I have been debating with myself all week whether or not to get into the study.  Its a 50/50 chance whether I would start meds right away or be in the 50% that begins with CD4+ <350. Part of me would like to begin meds now and part of me is very afraid to do anything. I also have thought about getting involved trying to make "lemonade" but is this a good enough reason?

Hey Wolffman

I wonder, have your doctors been as aggressive as mine at recruiting you into the study? I am still actually waiting to give an answer to my doctor regarding this issue. In my case I think that thanks to some of the advice I have received on this forum that I will choose to not participate in the study.

Ann in particular made some excellent points in this thread. For both of us, we had infection around the same time early this year. If you start treatment right away, in the absence of symptoms and when your immune function is high you will never know if you turn out to be a controller or LTSP.

Also you are not following the guidelines for indication of treatment. Those guidelines are set by international institutions (WHO), national bodies etc and have the consensus of thousands of scientists and research supporting them.

In other diseases such as cancer, heart disease, even high cholesterol, clinical treatment guidelines are followed very strictly. I don't know why HIV should be any different. If you start treatment right away you are operating on someone's current theory and theories are constantly evolving.

I applaud your noble notion to want to get involved and contribute but given your numbers and given the risk/benefit ratio, if I were you, I would not join the study. If you want to become involved you can volunteer at a AIDS hospice, get involved in community programs. If you are afraid then the best thing you can do is start reading, start asking questions and educate yourself.

You mention that you are scared. This is exactly the problem I have with the aggressive recruiting. When I was diagnosed I was in shock, almost like walking around with a cloud around my head. I felt like I was dreaming. So after the doctor drew the 10 year expected life span graph I was swept into another room and a lot of blood was taken. They tested for everything. They then sent me for a chest xray and preformed a TB scratch test, STD tests etc. I thought this was all routine care given after a diagnosis. After all the tests were over then I was given the study outlines and a doctor started checking off all the criteria that they had just met by testing me. So actually they were preforming all those tests to prep me for the study.

I understand how important medical research is and not withstanding the fact that I got my diagnosis at an anonymous clinic in a Red Cross AIDS research center, still the way my case was handled seems on the verge of having ethical implications. I was in shock at the time and not in a position to properly consider all my options and give my informed consent. Luckily my instinct kicked in and I asked to "think about it".

So I am still thinking and perhaps you should be too. It was a good start to post here. So far I have found some people's answers to be very helpful. There are some good debaters and sharp minds on here with a lot of information and experience.
Infection date: February 14, 2010 (yeah really)
08/03/2010 - CD4 621 (27%) VL 72,250
25/03/2010 - CD4 981 (28%) VL 122,719 <-started anti-oxidants (ABCDE, Se, ALA, NAC)
11/08/2010 - CD4 1,365 (31%) VL 5,451

Offline Hellraiser

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Re: Whats your opinion? Should I start Meds?
« Reply #130 on: September 11, 2010, 02:40:58 AM »
They tested for everything. They then sent me for a chest xray and preformed a TB scratch test, STD tests etc. I thought this was all routine care given after a diagnosis. After all the tests were over then I was given the study outlines and a doctor started checking off all the criteria that they had just met by testing me.

Aside from the Chest X-ray this IS the standard post diagnosis.  Other infections can aggravate an HIV infection, as well as just wanting to make sure you're still clear of say TB, etc etc etc.  My doctor did all of the same things and had no intentions of enrolling me in any studies.  Or if he did he certainly never said anything about it.

Offline jkinatl2

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Re: Whats your opinion? Should I start Meds?
« Reply #131 on: September 11, 2010, 03:16:40 AM »
Aside from the Chest X-ray this IS the standard post diagnosis.  Other infections can aggravate an HIV infection, as well as just wanting to make sure you're still clear of say TB, etc etc etc.  My doctor did all of the same things and had no intentions of enrolling me in any studies.  Or if he did he certainly never said anything about it.

I had the same testing done when diagnosed, and have many of them done routinely, if not every year, at least every other.

though no one has seen fit to ask me to enroll in a study, sadly. I could certainly use the money :)

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Offline natthai

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Re: Whats your opinion? Should I start Meds?
« Reply #132 on: September 11, 2010, 06:18:58 AM »
Aside from the Chest X-ray this IS the standard post diagnosis.  Other infections can aggravate an HIV infection, as well as just wanting to make sure you're still clear of say TB, etc etc etc.  My doctor did all of the same things and had no intentions of enrolling me in any studies.  Or if he did he certainly never said anything about it.

As was said by a poster earlier in this thread "You're making a shaky logical deduction there buddy." (not my words), or at lease over generalizing. I assume from your capitalized assumption that you live in the US or a western country? If so then I can understand your perceptions about what is standard medical care. Consider yourself lucky because the great majority of HIV infected people in this world are not and do not get such care as you perceive.

In this case which is what I was talking about in regards to my post, START is a large international study and the post diagnostic tests are certainly not standard care in my city/country. If you want any medical care you have to pay for it and those tests are extremely expensive. There is no social support system in many parts of the world.

Those tests were preformed for the purpose of enrolling me in the study. I confirmed this afterward and was told under normal circumstances I would have had to pay several hundred dollars for those tests, if I wanted them. Furthermore, others I know who were informed of their diagnosis did not even get a doctor counseling they were told over the phone by a lab technician! With no support- either counseling or medical provided. I myself was told my diagnosis OVER THE PHONE. "Your test came result show positive, Please come in." I was at work at the time and I almost fell over. In once sense I am lucky they were running the START study because that may well have been the end of my support.

These are very very important issues to keep in mind because these are the realities faced by suffers of HIV for most people affected by this disease in the world today.

However your generalization does raise a very valid point and that is one of the benefits to enrolling in a study like this is that they do provide you with funds for tests, drugs, transportation, doctors consultations. So recruiting at the time of infection when you are really thrown off guard and emotionally vulnerable seems like a really good idea since you are comforted by the feeling of receiving really good medical care. As jkinatl2 stated, he would have liked the option because he certainly could have used the money.

What I was trying to explain in my post about this and how it pertains to when to start medication is what I explained above. At the time of diagnosis I was in shock, certainly not capable of making a calm and rational decision of the magnitude that I was being presented with at the moment. As I am sure you know, once you start you have made a commitment to stay on these drugs for the rest of your life. A very big decision indeed.

What would happen if I agreed to join the START study right after diagnosis as one of my friends did in a previous study? 3 years later after it finished, one or two of the drugs used in the study are not available to him.  At the end of the study he was in a real jam because he couldn't obtain the same drugs he was on for 3 years once the study ended. He ended up having to substitute a generic form of AZT which turned out to be a disaster.

These along with many other issues are all things that one must consider when deciding to join a research study right after diagnosis and this sort of calm rational analysis does not occur to one who has just received a shocking life altering diagnosis.
Infection date: February 14, 2010 (yeah really)
08/03/2010 - CD4 621 (27%) VL 72,250
25/03/2010 - CD4 981 (28%) VL 122,719 <-started anti-oxidants (ABCDE, Se, ALA, NAC)
11/08/2010 - CD4 1,365 (31%) VL 5,451

 


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