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Author Topic: Whats your opinion? Should I start Meds?  (Read 16467 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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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: 471
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: 765
  • 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: 11,458
  • 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, 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, 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.
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 #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"

 


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