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Author Topic: Saying hello.  (Read 5576 times)

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Offline Boze

  • Member
  • Posts: 477
Saying hello.
« on: April 12, 2010, 02:32:09 PM »
Hello guys. I found out the news 2 weeks ago.

I may be some sort of a record-setter - and should probably be a poster boy for the virus. Straight, early 30s, have been in a monogamous long-term relationship for many years. 2 years ago had one instance of unprotected o/v sex with a girl (friend of friend) and got the virus. This was the only casual sex experience in my whole life, have always been very selective and careful (3 long-term relationships otherwise).  Alantis Morissete song Ironic comes to mind :)

My stats: CD4 - 690, VL 19,000, CD4% - 35.

I would like to start ARVs asap, hoping the doctors here (UK) will allow it despite the local guidelines.
==========
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

  • Member
  • Posts: 430
  • What we love, we shall grow to resemble.
Re: Saying hello.
« Reply #1 on: April 12, 2010, 02:53:54 PM »

Borzal,

Sorry to hear your news!  I had lots of casual sex for years, but always protected, and never got HIV.  Then I had condomless sex once--the whole thing lasted mere minutes--and I got HIV.  So I understand how you feel. 

You can see that I got HIV close to six years ago now, and I still have decent numbers and feel good, so don't despair!  And your numbers may be better than mine, judging from the percentage. 

I don't agree with starting ARVs ASAP with numbers like yours, but I won't try to convince you of my opinion; there are arguments for starting ASAP and the question is whether you agree with them.  But I do suggest waiting until you've had time to 1. get over the immediate emotional state you must be in with the news you've just gotten, 2. read widely on the topic and form your own views on it; and 3. et at least one more set of labs.  That way, when you make a decision about starting treatment, it will be a dispassionate, informed one, and one based on a clearer picture of your own immune system's situation than one single set of labs can provide. 

Good luck!
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 mecch

  • Member
  • Posts: 11,435
  • red pill? or blue pill?
Re: Saying hello.
« Reply #2 on: April 12, 2010, 03:46:12 PM »
Welcome.
So you didnt't mention - how is your gf taking this news, does she know yet? Has she been tested?
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline Boze

  • Member
  • Posts: 477
Re: Saying hello.
« Reply #3 on: April 12, 2010, 09:12:27 PM »
Thanks, Nestor. Looks like we're in similar situation (first unprotected encounter -> poz). I've actually read as much as I think is available on the topic now (ie when to start meds, April 2010) and the decision is heavily weighed toward starting now rather than waiting.

The way I see it the risks are:

1) Wait until my cd4 drops to 500 from 690 while VL ~ 20,000. Ie my system is damaged by the virus but I withhold meds.
2) Start meds right away - suppress the virus and begin a long-term relationship with modern meds (probably Atripla) whose long-term effect is unknown.

The way I see it, (1) is probably more damaging to my body. I hope that drugs will continue improving and we'll have less toxic cocktails 10 years from now. But the damage done to me today by a 20k load will remain forever.
I am pretty ogranized, so the concept of adherence is not that huge of a deal to me. Of course it's not something I look forward to, but between taking a daily pill and having a virus slowly fighting my immune system, I prefer the former.
It also seems that the current medical opinion considers virus damage now a greater threat than medication side-effects. In other words - we will have to take medication for many years - I am not sure how big of a difference 25 vs 30 years will make.

Mecch - my partner has tested negative (after 18 months of cohabitation post my infection) for which I am very grateful. But we are not out of the woods yet - she will have to get tested in a few months again.
==========
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

  • Member
  • Posts: 430
  • What we love, we shall grow to resemble.
Re: Saying hello.
« Reply #4 on: April 12, 2010, 09:22:34 PM »
Well, it sounds as if you have indeed done your homework--you are also remarkably calm about things considering how recently you've gotten the news!  I'm impressed!  I'm a little disturbed sometimes by what looks to me like people being pressured into starting meds immediately after diagnosis, when they're in an emotional state and haven't even had time to gather information for themselves: but it's clear that that isn't your case.  Good luck!  

P.S. Why are so many people still looking to Atripla as the first drug of choice?  Since I've been on these forums I've heard a whole litany of complaints about it--just glance at the "Treatment and Side Effects" page--whereas I've almost never heard anything bad about Isentress/Truvada.  I'm sure it's the latter that I would want if I were starting meds now.  
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 Hellraiser

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  • Posts: 4,136
  • Semi-misanthropic
Re: Saying hello.
« Reply #5 on: April 12, 2010, 09:26:37 PM »
Because Atripla is once a day which is half as many times to screw up dosing as Isentress/Truvada.  In addition the side effects of Atripla seem to be really mild for most of us, just a select few have major issues with it.  I think for a first choice to get your VL down to undetectable Atripla is probably your best bet and then when you have more leeway with dosing you might be better off with another regimen with a better profile of managable side effects if the Atripla doesn't work for you.

Offline Boze

  • Member
  • Posts: 477
Re: Saying hello.
« Reply #6 on: April 12, 2010, 10:05:47 PM »
Nestor,

I guess I look at my getting sick as some sort of "life-altering event" that one has no control over and yet a certain % of people have to endure. It definitely seems unfair (the odds are mind-numbing - i'd rather win a lottery :). Yet plenty of people get run over by buses / get incurable cancer / crash in airplanes. So our lot is actually not that bad (relatively) - hope for X years of ARV regimen followed by something better (after all those patents expire in 7 years :)

The doctors here are not at all in favor of treatment - I don't even know if my request will be approved. I simply rely on all the studies I read and the opinion of brightest doctors I've come across online.

Thank you very much for the Insentra/Truvada advice, I will look into it. I think we read a lot of complaints about Atripla mainly because most people are put on it - hence a large amount of complaints. But it has to be weighed vs total amount of people taking it and the convenience of once-a-day pill. If anything, I think a website such as this should have some sort of a wiki database on frequency of side-effects for each drug, where all users would register  their experience (pos and neg). Now I think we have a somewhat biased representation as people with problems tend to voice their complaints more so than those without. It's a natural human response - complain and seek advice/solace about problems, go on with life when everything works (after all there is no "i am hiv negative" forum :)
« Last Edit: April 12, 2010, 10:21:03 PM by borzel »
==========
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 mrmcgoo

  • Member
  • Posts: 8
Re: Saying hello.
« Reply #7 on: April 12, 2010, 10:58:59 PM »
Borzel, can you share your seroconversion symptoms?

Offline mrmcgoo

  • Member
  • Posts: 8
Re: Saying hello.
« Reply #8 on: April 12, 2010, 11:00:46 PM »
And also, you say your partner has not been infected.  Are you having unprotected sex?

Offline Boze

  • Member
  • Posts: 477
Re: Saying hello.
« Reply #9 on: April 12, 2010, 11:10:57 PM »
Hellraiser - thanks for your recommendation. From what I read it looks like:

1) Atripla has the convenience of 1 pill a day

2) Instentra-Truvada have fewer side-effects, most of which seem to be due to absence of Sustiva component. Gilead is actually developing the Atripla sequel (Quad) so that it will not have Sustiva - they are actually using that as prime motivation for development.

Unfortunately I can't find any statistics on how widespread the side-effects are for each combination.

MrMagoo - I actually had a very heavy seroconversion, was one of the strongest sicknesses I've experienced yet. Started about 4 weeks after, I took some antibiotics as my temperature hit 40. Got some improvement, than after about a week got worse and  I had to go to a hospital (1st time for me) and got an IV and some more drugs. After that I was ok.
As far as protection - we never used it with my partner  - until now, that is - as have been in a monogamous relationship for many years.
==========
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

  • Member
  • Posts: 3,782
  • Smart ass faggot ©
Re: Saying hello.
« Reply #10 on: April 12, 2010, 11:42:44 PM »
Not much to add to what the other fellas have said...

Just hello, welcome, sorry about the HIV thingy, glad that you've found us, and all that other good ish.  Stick around for joy.
"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 Inchlingblue

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  • Posts: 3,119
  • Chad Ochocinco PETA Ad
Re: Saying hello.
« Reply #11 on: April 13, 2010, 06:34:08 PM »
  I think for a first choice to get your VL down to undetectable Atripla is probably your best bet and then when you have more leeway with dosing you might be better off with another regimen with a better profile of managable side effects if the Atripla doesn't work for you.

Isentress/Truvada lowers viral load just as fast if not faster than Atripla. This seems to be a hallmark of integrase inhibitors, there's a new one being studied (GSK 572) that was described as "unprecedented" in how fast and efficiently it lowered viral load.

Maybe you meant as far as adherence being easier once a day for certain people?

LINK:

http://www.aidsmap.com/en/news/7DBF2D20-ECAD-402C-BE5C-321401A49E70.asp

Borzel, are you  in the UK? If you are at least you don't have to worry about healthcare.

If your GF is negative that would be amazing, considering it's so much easier for a man to pass it on to a woman (as opposed to the other way around).

I'm on Isentress/Truvada and experiencing zero side effects. I went undetectable in about a week (probably less), my VL was only about 9K though. CD4s went from about 350 to about 700. I don't feel at all sick, if it were not for having to take the meds and go see the doctor every few months it's hard to believe I have HIV. Isentress is likely to be approved for once a day dosing; some people are already taking it that way and doing fine.

Truvada can have long term consequences on the kidneys (because of the tenofovir component) but it seems an unavoidable med for most people at the moment, there will probably be better choices in the very near future.

 
« Last Edit: April 13, 2010, 07:46:18 PM by Inchlingblue »

Offline Boze

  • Member
  • Posts: 477
Re: Saying hello.
« Reply #12 on: April 13, 2010, 07:55:32 PM »
Rev Moon - thank you for the welcome, very glad to find this community. Reading through the forum has really put my mind at ease as I learned a lot about the disease. I also don't feel that I can share the news with anybody except the people on a 'need to know basis' (ie those who must know), so having a place to share my plight with others is definitely a huge boost.

Inchlingblue - thank you for the Issentra/Truvada tip. How did you decide on it vs Atripla? (Ie I presume you were ok with taking 3 pills as long as side effects were better?)
I am in the UK, but am a bit worried since the local guidelines still specify arv @ 350. I don't know if they will acquiesce to my request.
==========
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 Inchlingblue

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  • Posts: 3,119
  • Chad Ochocinco PETA Ad
Re: Saying hello.
« Reply #13 on: April 13, 2010, 08:12:48 PM »
Inchlingblue - thank you for the Issentra/Truvada tip. How did you decide on it vs Atripla? (Ie I presume you were ok with taking 3 pills as long as side effects were better?)
I am in the UK, but am a bit worried since the local guidelines still specify arv @ 350. I don't know if they will acquiesce to my request.

I did a lot of research I came to the conclusion that Isentress was the best choice for me. Most of the data on it was when combined with Truvada so that was a no-brainer as far as what to combine it with.

Sustiva is an excellent drug and definitely works but why bother with not only possible CNS side effects and the rash but also the fact that it's recommended that it be taken with no food in order to lessen side effects. I did not want to have to worry about timing it with my meals or having to think about what I was eating, since some foods (higher fat, I think) tend to affect Sustiva side effects more than other foods, it just sounded like more of a hassle than twice a day dosing. Sure, Isentress is twice a day but it can be taken with or without food and has such an excellent side effects profile, it just made more sense.

I'd like to eventually switch out the Truvada for Reyataz and have a two-drug combo which would not only be cheaper but would have less overall toxicity (Reyataz is a good PI with minimal issues attached). But it's too soon to do that switch, not enough data yet. There have been a couple of studies that found Isentress/Reyataz to work very well and it's being studied further in clinical trials.

I have gotten used to the twice a day dosing it's not that big of a deal for me and, as mentioned above, it will likely be once a day soon anyway.

One more thing about Isentress, despite the fact that it's potent and works very well and has few side effects but it does have a low barrier to resistance, meaning a person can become resistant to it fairly easily if they are not adherent or if they combine it with the wrong meds (all it takes is one mutation I think). Once undetectable the timing does not have to be exact, it can be a few hours off (as with most current HIV drugs) but it's important not to actually miss doses as this could lead to resistance.
« Last Edit: April 14, 2010, 12:40:49 AM by Inchlingblue »

Offline Inchlingblue

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  • Posts: 3,119
  • Chad Ochocinco PETA Ad
Re: Saying hello.
« Reply #14 on: April 14, 2010, 01:04:19 PM »
I am in the UK, but am a bit worried since the local guidelines still specify arv @ 350. I don't know if they will acquiesce to my request.

I guess they go by the latest European Guidelines?

LINK:

http://forums.poz.com/index.php?topic=30163.0

Offline Nestor

  • Member
  • Posts: 430
  • What we love, we shall grow to resemble.
Re: Saying hello.
« Reply #15 on: April 14, 2010, 06:02:45 PM »

The argument from ease of adherence is a strong one.  Back when I was taking various supplements, or when taking an aspirin for headache, it happened a number of times that I'd find myself staring at an open bottle and saying to myself "Did I just take one--or did I only just open the bottle in preparation for taking one?"--and having absolutely no idea which; lack of short-term memory strikes again.  Then all I could do was make my best guess.  That isn't fatal with an astragalus pill or an aspirin, but I sure wouldn't want to do it with HAART! 

Still, the ease of taking something once a day as opposed to twice would still come far lower in the list of considerations than several other things.  In my case, always dealing with borderline depression as it is, I really don't think atripla is what I would choose for myself when there are other options. 

Also, you and Hellraiser are right in saying that what we read here is not a representative sample of people's experiences.  Probably everyone who's having a significant problem with atripla posts here talking about the problem, whereas of the (presumably many) people who are not having problems, probably only a few post here to say "I'm doing fine!"  Yet still, the effects of, in my case, about eight months now of reading threads not only in the "Treatment and Side Effects" page but also in the "Mental Health" page has been to put a big warning sign next to atripla in my mind; we simply don't have many such threads about Isentress, which makes me incline to that side for the moment. 

You ask a powerful question:

Quote
In other words - we will have to take medication for many years - I am not sure how big of a difference 25 vs 30 years will make.

But then Inchlingblue writes:

Quote
Truvada can have long term consequences on the kidneys (because of the tenofovir component) but it seems an unavoidable med for most people at the moment, there will probably be better choices in the very near future.

So to me, yes, five fewer years of something that can have long-term consequences on the kidneys would seem like an extremely desirable thing.  Also, if it's true that better choices are going to emerge in the very near future, holding out for their appearance sounds to me like a pretty reasonable thing to do when one's numbers make that a reasonable choice.  But I am intensely aware that we are all more or less in the dark here.  Who knows which is the better choice?  We are the experiment, and no doubt the next generation (if HIV is still around then) will profit from the lessons we've learned. 

Several interesting points are made in the exchange between Ann and Inchlingblue here--at the bottom of the third page of a long and interesting discussion:

http://forums.poz.com/index.php?topic=31611.msg387935#msg387935

But I would be surprised if a doctor actually refused HAART to someone who wanted it--unless there were economic considerations in play.  I recently posted an interview with a doctor who does not believe in starting meds "too soon" (his words), but even he says that if a patient is eager to start meds despite high numbers, he doesn't say no. 

By the way, I also tell people only on a "need-to-know" basis.  Ideally, part of me would like to tell everyone (fight the stigma, etc.) but in the real world I just don't want everyone I know to go around thinking of me as "the guy with HIV".  I've noticed that the few people I have told started to look at me differently and be more nervous around me afterwards, and I just don't want to go through that with everyone. 

Good luck!  I really admire the calm and fortitude with which you are dealing with this; I know two weeks into HIV, I was still in the "mutely palpitating" stage!
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 tommy246

  • member
  • Member
  • Posts: 435
Re: Saying hello.
« Reply #16 on: April 15, 2010, 03:24:22 PM »
Welcome to the forums borzel im also from the uk but live in spain. Well it certainly sounds like you have done your homework you seem to of handled the situation very well . The meds issue is a very personal choice and a major influence is just how you feel with no meds. I felt awful no energy and ached all over and now feel fine on meds (see my numbers below ) whereas other posters ie ann the moderator has been something like 12 years pos with no meds and feels fine.
Its a difficult decision but like a poster has said waiting another 2 or three months and getting another blood test wouldnt be a problem as you could even turn out to be one of the lucky people who can control the virus with no meds.To be honest if i had  felt better with no meds and your numbers i might of waited a couple more years but i wouldnt of wanted to of dropped below 500 before starting.
You also mentioned you have only told people on a need to know basis thats also what i did , i only told my wife (who is neg) and my brother . I have used this site as my therapy its been fantastic i have gone in 12 months from thinking 24-7 about hiv to going most days of only thinking of it when i take my med.
Anyway good luck with everything.
jan 06 neg
dec 08 pos cd4 505 ,16%, 1,500vl
april 09 cd4 635 ,16%,60,000
july 09 ,cd4 545,17%,80,000
aug 09,hosptal 18days pneumonia cd190,225,000,15%
1 week later cd4 415 20%
nov 09 cd4 591 ,vl 59,000,14%,started atripla
dec 09  cd4 787, vl 266, 16%
march 2010  cd4 720 vl non detectable -20  20%
june 2010  cd4  680, 21%, ND

Offline neverwilldoitagain

  • Member
  • Posts: 5
Re: Saying hello.
« Reply #17 on: April 23, 2010, 10:57:56 PM »
hello,

sorry to hear your news. but just want to get this story straight:

you now remembered clearly that you got the infection 2 years ago after an unprotected sex with a female.
And, during the 2 years time, you had all unprotected sex with your partner and for all those unprotected sex intercourses, your partner was luck not to get infected at all.

is that correct?


Offline Matty the Damned

  • Member
  • Posts: 12,228
  • Ninja Please
Re: Saying hello.
« Reply #18 on: April 24, 2010, 02:41:15 AM »
hello,

sorry to hear your news. but just want to get this story straight:

you now remembered clearly that you got the infection 2 years ago after an unprotected sex with a female.
And, during the 2 years time, you had all unprotected sex with your partner and for all those unprotected sex intercourses, your partner was luck not to get infected at all.

is that correct?

Never,

Please don't post in this forum. It's for HIV positive members only. The only place you should be asking questions is in your own thread in the Am I Infected? forum.

MtD

Offline Boze

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Re: Saying hello.
« Reply #19 on: May 17, 2010, 08:38:22 PM »
neverwilldoitagain,

sorry late reply - just found a function that shows the threads with replies that I participated in.

You are correct. I've seroconveted in Aug08 and didn't find out I was poz until this March. I've been having unprot sex with my partner all this time and she's been testing negative so far.
I think it's a function of viral load - my vl was probably low for the first year.

You've been told that you can't post here - so pm me if you want more details.
==========
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 Inchlingblue

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Re: Saying hello.
« Reply #20 on: May 18, 2010, 02:19:08 PM »

So to me, yes, five fewer years of something that can have long-term consequences on the kidneys would seem like an extremely desirable thing.  

The thing is that untreated HIV has also been found to be damaging to the kidneys. It makes it a tough choice deciding which is worse. Tenofovir does not automatically cause kidney damage, it happens sometimes and with some people.

Offline leatherman

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Re: Saying hello.
« Reply #21 on: May 18, 2010, 03:29:05 PM »
We are the experiment, and no doubt the next generation (if HIV is still around then) will profit from the lessons we've learned.
Exactly! We're barely two decades into treating this disease, so all HIV meds have been and still are sorta "experimental" because no one has lived with HIV 50 yrs and on meds yet. The long term survivors haven't been the only guinea pigs; everyone taking HIV meds is part of the continuing experiment. Atripla is just a few years old, so there are still years and years and years worth of the experiment to go before they can conclusively say what the results have been about all of the meds.
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Offline Boze

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Re: Saying hello.
« Reply #22 on: May 18, 2010, 06:27:08 PM »
"Atripla is just a few years old, so there are still years and years and years worth of the experiment to go before they can conclusively say what the results have been about all of the meds."

Leatherman,

That's a valid point. But I have been thinking - do we have another example of a drug that has been taken for 10 years with no side-effects at the time. And then 20 years later it turns out that damage has been done to the system?
The way I see it (and I'm not very knowledgeable layman) - human body tells us if we have a problem. If a million people take Atripla for 10 years and none of them have developed dangerous diseases (yet) - it's not likely to happen in the next 10 either.
The drugs that were toxic in the beginning of HAART - you KNEW they were toxic. Today the argument is more "we have nothing bad happening now, but maybe something will come out". So - do we have a precedent for 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 leatherman

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Re: Saying hello.
« Reply #23 on: May 18, 2010, 07:54:51 PM »
But I have been thinking - do we have another example of a drug that has been taken for 10 years with no side-effects at the time. And then 20 years later it turns out that damage has been done to the system?
I would imagine we could find some sort of facts that kinda fit that description that do explain cholesterol problems, PN problems, liver and kidney problems, and especially heart issues that people are beginning to deal with today. All of those are long term effects of many of the old, and even new, meds. LTSs are always finding new issues relating to meds that they took in the past. ;) And the jury is still out on whether the meds play a part in the inflammation and accelerated aging issues.

I qualified my initial statement with "kinda" because your timeline of 10 yrs on a medication and then 20 yrs later can't be done. AZT wasn't approved until 1987 so we won't reach that 30 yr timespan until 2017. HAART didn't start until 1996, and that would push your timespan out to 2026. (Atripla itself was approved until 2007, though there is data about it's older component drugs)

As I frequently point out to the med/side effect worriers, 100% of med takers do not have those issues though. The vast majority of med takers do not experience such major negative side effects. If they did, the FDA probably would not have approved the meds. However, at this point in time, we only have educated guesses on how many people who took Viread for 5-10 yrs will actually develop liver or kidney issues, as that long term usage side effect might take several more years to show up.

But don't misunderstand me. I took AZT mono-therapy and have to give it credit for keeping me alive until liquid norvir, and videx ec, and sustiva came along (that wasn't a regimen per se, but all meds that I have taken). The meds today are worlds apart from azt mono-therapy, with guarantees of longer life and better health. But just like when AZT came out and all the long term ramifications were unknown, so the long term issues are not totally known about Atripla and other meds either. Other diseases have been studied for longer periods of time, and haven't had near the medication improvements and knowledge gains as we've seen for HIV. Barely one generation of people have even been effected by this epidemic and the best medical therapy of HAART is barely 15 yrs old, so I'm not surprised that there's not a cure yet and that our treatment isn't completely past the "experimental" phase.
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Offline Boze

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Re: Saying hello.
« Reply #24 on: May 18, 2010, 08:24:14 PM »
Right - I totally understand that you are appreciative of the therapy we have and are not bashing it. I am just laying out my thoughts on the issue here - not taking an opposing view.

The thing about LTS that I find difficult to compare to people who recently got it is that, by definition, a LTS spent a long time with HIV without therapy and probably started at a lower CD4 nadir (as well as drugs that were known to be toxic when they took them). So could the complications you referred to be brought about by years of unchecked viremia?

I would be actually curious to know how healthy are the people who started on the drugs we have today, say, 7-10 years ago with a healthy CD4. (Atripla components have been approved between 1998-2003).
==========
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 leatherman

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Re: Saying hello.
« Reply #25 on: May 19, 2010, 02:34:40 AM »
Right - I totally understand that you are appreciative of the therapy we have and are not bashing it. I am just laying out my thoughts on the issue here - not taking an opposing view.
Cool. I wasn't looking to be the opposition either. ;) ;D
I was just explaining how I think we're still very close to the beginning of this epidemic as we're just barely coming to the end of the first generation (20-25 yrs) of a serious amount of people affected by it. When you factor out the years it took to realize what was happening and how long it took scientists, doctors, and governments to react, there's only been 15-20 yrs of concentrated effort to deal with it - which probably isn't long enough to be much past experimental therapies and barely long enough to be in the zone of established therapies.

The thing about LTS that I find difficult to compare to people who recently got it is that, by definition, a LTS spent a long time with HIV without therapy and probably started at a lower CD4 nadir (as well as drugs that were known to be toxic when they took them).
I agree with part of your supposition but not all of it. Yes, the drugs were more toxic; but the issues of time without therapy and lower cd4 nadir, I can't agree with that so much as today there will be someone admitted to the hospital with an OI because of a very low cd4 who has gone a long time with therapy.

The definition of an LTS is more like a person who has known about and been treating their HIV for 10-15+ years. Right now the people fitting that time guideline were those who took those early meds. For example, I was probably infected in 1985, diagnosed with AIDS in 1992, took AZT mono therapy, and had a cd4 of 5 when I was hospitalized with PCP.

However someone infected around 1990, and hospitalized in 2000 with a cd4 count of 15 and PCP would have been diagnosed with HIV/AIDS and started on HAART. Although that person was infected 20 yrs ago, they would not really be considered an LTS because they were started on HAART and actually only knew about and were living with their HIV for 10 yrs now. While I can understand how they seem to be a LTS, the advent of HAART really made their encounter with HIV a heck of a lot less to "survive" when compared to no meds or something like AZT or those first experimental drugs that never passed muster.

But as you and I aren't arguing here (and we're sure not arguing about the definition of an LTS ::) :D ), I think you make a good point. It is hard to make comparisons between the people who started treatment in 1995 versus starting treatment in 2005. Because either of those people could have started with a long time untreated virus and a low cd4, the difference in therapies, of course, means a difference in the outcome.

A recent client at my ASO this past week, was probably infected in 2001, was just hospitalized with PCP and had a cd4 of 20. Would this person count as an LTS? Although nearly infected a decade ago, this person didn't know their status and didn't seek any treatment until 2010. Many people today, do not test early and only find out when they are hospitalized. Those people have gone a fairly long time (perhaps as much as 10 yrs) without therapy and have a low cd4 (hence the OI that put them in the hospital); but they are HIV newbies rather than LTS - though they have the qualifications that you mentioned of being infected a long time and having a low cd4

But that only reinforces my position then as it means while we might know more now about the long term outcome of those who started with the early treatments, we know nearly nothing about the long term outcomes of someone who started out on the improved HAART therapies - because it hasn't been a long time yet. So the "LTSs" were guinea pigs for one batch of meds before switching to the newer batch; and the "newbies" are guinea pigs for the long term outcomes of HAART.

therefore, IMHO, we're all guinea pigs. squeak, squeak :D

So could the complications you referred to be brought about by years of unchecked viremia?
maybe. but read all those nice informative package inserts with the meds (or the wonderful AidsMeds lessons and drug listings ;) ) and you'll see that those are listed as side effects. There are members here (mostly in the LTS forum, which stands to reason as we're talking long term side effects) with cholesterol, kidney, liver, and heart issues that never had them until they began certain meds.

I would be actually curious to know how healthy are the people who started on the drugs we have today, say, 7-10 years ago with a healthy CD4.
I agree. That would be an interesting report.

I totally understand that you are appreciative of the therapy we have and are not bashing it.
that's right because for all we know, just like the AZT kept me alive until something better came along, even if the current HAART regimens prove to give all us horrible problems by 2020 ::), another 10 yrs will have gone by and who knows what will be on the market for us guinea pigs to take then. :D

But that's a question best answered over there in the research thread. ;)


edited to add
you might want to glance at the thread about FOTO where there is a discussion about how the Aptrila current dosing schedule may even be at an experimental level and not yet optimal.
« Last Edit: May 19, 2010, 02:23:08 PM by leatherman »
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Offline Boze

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Re: Saying hello.
« Reply #26 on: May 20, 2010, 03:12:39 PM »
Very interesting points you raise. Well I hope all the new stuff being developed now will come to fruition - the LTS forum is a scary place :(

By the way - kinda off-topic - how would you estimate the % split of LTS (who are adherent and UD) between those who are doing fine and experiencing serious health issues? I can't figure it out - media tend to portray the issue in very binary colours. For example the New Yorker article about accelerated ageing vs the HIV+ guy on the Designer Reality show who looks like he's a picture of health at 33 (and he's 40). Reading the LTS forum is also biased - as people tend to post about stuff that bothers them.
« Last Edit: May 20, 2010, 03:17:57 PM by borzel »
==========
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: Saying hello.
« Reply #27 on: May 20, 2010, 03:19:37 PM »

I don't want to be an LTS :)


What, you want to die in the short term? You do  know, don't you, that LTS means long term survivor. We have LTS in these forums who survived the early days and do not suffer from long-term side-effects. Of course some of our LTS do  suffer, but not all.

I know I  sure as hell want to be an LTS!
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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 WillyWump

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Re: Saying hello.
« Reply #28 on: May 20, 2010, 03:30:37 PM »
When I grow up, I want to be an LTS.

-Will
POZ since '08

Last Labs-
6/3/14 CD4- 736, UD 34%
6/25/13 CD4- 1036, UD,
2/4/13, CD4 - 489, UD, 28%

Current Meds: Prezista/Epzicom/ Norvir
.

Offline Boze

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Re: Saying hello.
« Reply #29 on: May 20, 2010, 05:17:49 PM »
I rather hope that science will come up with an effective solution before I become  an LTS. I appreciate it may sound naive to those who've lived with the virus for a long time, but let the newbie hope :)

I realized after posting that my original phrasing could be misconstrued and so I edited it not to offend the LTS, who I have only huge respect for.
==========
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 leatherman

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Re: Saying hello.
« Reply #30 on: May 20, 2010, 05:43:07 PM »

I know I  sure as hell want to be an LTS!
ah, that quote function caught a serious editing difference in someone's post. LOL

oh course, everyone wants to be an LTS. It's fabulous. ;D
In the month when I get to lie around the pool, reading books and tanning, along with probably attending an rally to request more ADAP money to help other people with HIV, I'm also remembering the anniversaries of the deaths of two partners who don't get to do any of that stuff. Being dead sucks, while being an LTS is a pretty damn good thing. ;)  ;D


By the way - kinda off-topic - how would you estimate the % split of LTS (who are adherent and UD) between those who are doing fine and experiencing serious health issues?
hey, it's your thread, so nothing you want to talk about is OT really.  :D

As far as to the spilt, it's really hard to say. I was explaining in another thread recently, at times in the past when I was adherent and pretty close to UD, some of the issues I had with previous meds (barfing every day, anemia, wasting, etc) but that was way back in 1995. Today, I'm a good 98% adherent, and besides a few days of diarrhea as I switched over from norvir gelcaps to norvir tablets, I'm actually the healthiest I've been in 20 yrs and no longer have any other side effects at all (and all with >300 tcells ;D ) No heart, kidney, lung, cognitive issues. Now I do have a touch of PN and it's hard to tell nearing 50 whether these aches and pains are "accelerated" aging or just "regular" aging :D; but it doesn't keep me from riding my bike, doing landscaping and gardening (just dug out about 150 wheelbarrows of dirt at the end of April, leveling out the ground for the above-ground poll I put in), and it sure won't keep me from the amusement park (Carowinds) this summer, that's only 3 miles from my house.

HIV is like any other illness, while there are alot of generalities that can be made about the symptoms and side effects, everybody's body is different and not everyone is going to have so many problems. Some people get sick with high tcells and some get by with low counts. Some people barf, have the runs, or get rashes that clear up after a short while; while others have to take anti-dirreheal or cholestrol-lowering meds every day to counteract the long term effects.


the LTS forum is also biased - as people tend to post about stuff that bothers them.
I'm a firm believer that the opinions stated here at AM are biased. Since the large % of HIV+ people are those people who never have side-effects, never have med access issues, have good support systems, etc, those people have no reason to even come visit a site like this. Look at the member count (11800 at the time I typed this). Where are all those other millions from around the world? After taking out the ones without internet access, you'd still expect to see a greater member count - except those people haven't needed the resources of this site and so we don't see them - or hear their opinions either.

According to the various packing insert materials that I've read with many of the meds that I've been on (15 different ones through the 20 yrs. which sounds like a lot but that count is similar to a lot of other LTSers coming thru 20 yrs of improving meds), the vast majority of people suffer few, if any side effects. So I can only guess that most LTSers aren't having too many issues or we'd see a lot more people here requesting and passing info along about how to overcome those issues.

why I'd venture to say there's just a core of a few hundred people here who post regularly - which gives us, the readers, only a very limited view of the grand scope of HIV on the population. With a recent thread where I was posting, I came to realize that perhaps even my story doesn't really mean much to someone recently diagnosed. Having come through so many meds, side effects, and other affective issues (housing, poverty, acess to meds, depression, partner loss, etc), stats like my VL and tcell counts (as seen in the chart in my sig line) really have no bearing on someone who was able to access HAART from the very start of their treatment, who has always had adequate access to meds, and has had no resistance issues or adherence issues because of side effects. That's the real danger of being an LTS, not the side effects, but that your personal experience with 20 yrs of HIV/AIDS is so different than someone who has only been experiencing it 5 to 10 yrs, that your stories and advice don't add up to a hill of beans.


I rather hope that science will come up with an effective solution before I become  an LTS.
but the meds today are so very much better, and there are many fewer people troubled by side effects and long term issues. Like I told someone else in another thread the other day (obviously I must be part of that core of regular posters. LOL), don't borrow trouble by worrying about side effect issues that you may not even have. LOL
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

 


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