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Author Topic: Whats your opinion? Should I start Meds?  (Read 19236 times)

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Offline mecch

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

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

Offline Boze

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

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

I'll explain how we got here.

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

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

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

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

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

Offline skeebo1969

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


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

Offline Ann

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

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

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

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

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

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

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

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

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

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

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

Condom and Lube Info  



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

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

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

Offline newt

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

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

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

Offline Assurbanipal

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

There's a logical problem here.

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

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

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

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

Offline wtfimpoz

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

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

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

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



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

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

Offline wtfimpoz

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

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

Offline Hellraiser

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

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

Offline Assurbanipal

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

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

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

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

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

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

Be well



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

Offline Nestor

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

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


Hi Boze,

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

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

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

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


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

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

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

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

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


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

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

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

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


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

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

Boze writes:

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

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

Later on you repeat the theme:  

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


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

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

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

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


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

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

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

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

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

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

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

Offline Ann

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

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

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

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

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

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


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

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

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

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


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

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

Boze writes:

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

Later on you repeat the theme:  

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

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

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

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


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

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

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

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



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

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

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

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

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

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

Offline Nestor

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



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



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


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


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

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

max


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

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

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

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

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

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

 This doctor is also reported to have said:

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

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

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

...

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

...

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


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


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

max


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

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

Offline eric48

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


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

Hi Max 123,

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

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

Offline max123

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

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

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

Offline Boze

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

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

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

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

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

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

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

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

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



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

Offline Rev. Moon

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

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

And there is another member out there who specializes in extra-long and winding responses.  But they shall remain unnamed.
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Offline max123

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

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

Cheers! Eric

hi eric,

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

Offline natthai

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

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

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

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

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

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

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

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

Offline Ann

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

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

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

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

More generally, was previously said:


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

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

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

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

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

- matt


Edited for spelling
« Last Edit: September 09, 2010, 05:24:33 PM by newt »
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Offline eric48

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

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

Offline natthai

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

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

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

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

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

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

So there are a few concerns here:

1. This study is funded by a pharmaceutical company.

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

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

Offline Hellraiser

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

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

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

Offline natthai

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

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

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

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

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

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

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

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

Offline newt

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

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

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

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

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

Hope this helps

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

Offline wooffman99

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

Offline natthai

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

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

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

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

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

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

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

Offline natthai

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

Hey Wolffman

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

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

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

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

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

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

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

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

Offline Hellraiser

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

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

Offline jkinatl2

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

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

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

"Many people, especially in the gay community, turn to oral sex as a safer alternative in the age of AIDS. And with HIV rates rising, people need to remember that oral sex is safer sex. It's a reasonable alternative."

-Kimberly Page-Shafer, PhD, MPH

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Offline natthai

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

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

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

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

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

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

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

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

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

 


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