POZ Community Forums
Main Forums => Living With HIV => Topic started by: buginme2 on January 21, 2014, 10:20:15 pm
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http://www.thebody.com/content/73629/is-hiv-viral-undetectability-important.html?ic=700101
Besides the title of this article being grammatically weird I found this article/blog post published on The Body.com to be interesting.
The author who is an lts, questions whether an undetectable viral load is worth the toxicity experienced from current meds. He makes some good arguments such as:
recent research shows that HIV itself does not cause cd4 cell death directly and current meds miss the resovoirs altogether so the benefit of medication may be diminished. I paraphrased.
However some of his arguments are off the mark in my opinion. Such as:
he states that even though he took some of the early medications such as AZT and ddi etc he implies that current medications are also toxic and those newly diagnosed will be experiencing many of the same issues people on the older meds experienced.
Regardless and I think bottom line is, I felt like this article was written by someone who is frustrated and has experienced some pretty bad shit. For The Body to not only publish it, but then email it to me (I would have missed it otherwise) kind of left a bad impression. I wonder what others think or will think or will take what he says as truth or not.
I guess its good to get both sides. I get tired of reading about HIV through rose colored glasses the way most websites portray it as simple as a pimple on your butt. I guess I was just shocked to read such a negative portrayal on a major site.
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The rebuttal article by the dr was good.
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1) I don't see the link to the rebuttal -- can someone provide it for me?
2) I am of two minds on the issue, even before reading this, and it's not complicated. It's confirmed that early drugs like d4T (aka stavudine/Zerit) greatly damaged the mitochondria resulting in subsequent long term permanent dysfunction of something elemental to cellular metabolism. Mostly we know this in the form of lipodystrophy, but the drug was also well known to cause peripheral neuropathy (though others did too, like Hivid). I think for some LTSers there is the possibility that while they didn't experience these issues while on the drug, the damage showed up years later -- obviously with lipoatrophy. But perhaps for many of the damage doesn't rise to the level of being noticeable until over a decade later. If this is the case then these issues we read about might (hopefully for the newer diagnosed) be contained in the first generation of ART users.
3) But the writer is correct that it's possible that this #2 above is not the case, though from what I've read in clinical trials it is shown that toxicity levels are very low. Now, I'm not Mr. Science enough to know what's tested and how and/or how valid these claims are, but that's the best one can hope for. We simply will not know for the newest generation of HIV meds (say those from Prezista onwards, meaning 2006 - present) for another decade.
Basically we all know deep down there is now guarantee with any of these drugs long term, how could there be? And, of course, into the mix is the non-medication aspect of things occurring to us because of the virus itself, in which case then yes all you newly diagnosed people will be having really bad arthritis by the age of 45 in the next decade or two, just like me. And let me tell you -- it's an absolute blast contemplating spending the next 30 years (assuming "normal" lifespan thanks to what appears to be great results on paper, meaning lab numbers) using a cane or worse a wheelchair, much less the other nasties that are happening to others like that writer.
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http://www.thebody.com/content/73699/hiv-undetectability-unimportant-wrong.html?ic=sanext
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Thanks for the link. I hadn't seen the counter argument by Dr Young.
I'm not to impressed by Dr Young's rebuttal. He basically says hiv meds savd lives etc. I don't think that's disputed. But what about the rest?
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I struggle with the whole theme on HIV drugs possibly causing long-term issues. I mean what is the alternative?? Yes, perhaps lesser amounts of drugs, perhaps being OK with more virus being detected -- but ultimately, the only reason we have to worry about these things is that the drugs are keeping us alive.
The way I see it -- without these drugs I'd probably not have seen my last two grandchildren (at least the last 2), so if I have to deal with problems at 60 or 70 yrs old, so be it (I turn 50 in ~3 weeks).
Now that doesn't mean that we should be advocating for even better drugs and/or studies to see what does develop. Also -- are the issues drug related or long-term virus exposure -- let's explore that with some studies. I mean we should be trying to make things better - in addition to finding a vaccine and a cure.
Anyway -- that is my take. I am thankful for having whatever life I have -- so far the quality has been good, perhaps that will change someday. Of course, all the possible issues we face could hit just about anyone too, poz or neg, so................
Mike
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I think the writers assertions are based solely on his experience and are not reflective of all LTS using HIV meds for decades. While he talks about all the side-effects he has experienced, he immediately blames all of them on the meds and I do not think that is a fair assessment. Some side effects can be nasty, but eventually fade, others may linger, though there may be therapies available to alleviate those side effects. Others will cause permanent damage, as many of us know, but can we honestly say that these issues were caused "solely" because of HIV meds.
His reasoning seems simplistic and I think we would all like to know about long-term affects of the drugs, but the data just is not there yet. I have taken dozens of the oldest drugs and had side effects galore, however, I was working with a medical team that was willing to experiment with finding solutions, regardless of the source.
The author is angry about the state of his health and who can blame him? I just do not think that the way to discuss long term HIV therapy is to assume that everything bad that happens to you, is solely because of the drugs you take.
I also was not that impressed by the doctor's response, as this idea of "you can not alter doses of HIV drugs..." is last century thinking. We have studies doing exactly that, because we are still unsure about long term usage and we are discovering that some folks can take lower doses of drugs, with the same desired results.
Way too much thinking inside the box and not enough obsession to keep reaching.
The more we know about HIV, the more we realize how much we do not know.
Joe
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When I go to my LTS support group in the core of about a dozen members I'd say half of us have a fair amount of health issues while the other half seem to be on auto-pilot and have none. There's even this one guy who is 70 years old, was on a NIH AZT monotherpay trial and since his numbers were fine stayed on just that for ages until finally switching to Atripla in the past four years. He has no health problems and rides a bicycle everywhere around the city at that age. Most of the other LTSers that have no issues, however, seem to be ones that were able to stay off of meds for maybe a decade post-diagnosis or longer. At the same time I have 1,000 more cd4s than they do but have tons of issues. Basically HIV makes no sense if it doesn't want to...
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This may sound like a basic or silly question but for those who were on the meds known to cause problems azt,ddi,stavudine, etc when you were taking them did it feel as though they were toxic?
I know the older meds had more side effects than the newer ones so I'm not sure if I'm writing this correctly.
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This may sound like a basic or silly question but for those who were on the meds known to cause problems azt,ddi,stavudine, etc when you were taking them did it feel as though they were toxic?
For me, no -- but for many or most probably. When I was on AZT I worked ~50 hours/week and had a full social life going out dancing on the weekends for 12 hours at a time and out to bars in the middle of the week. I had some occasional headaches but that was it -- same for all those other ones. Never vomited once or had nausea, but every time even to this day when I switch medications I get bad headaches for a month.
I didn't really have any issue until HAART came out and was put on protease inhibitors and had continual diarrhea -- and the explosive kind where you had to literally be five feet from a toilet or you were in danger. I had to start taking 12 loperamide every day to keep it in control.
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This may sound like a basic or silly question but for those who were on the meds known to cause problems azt,ddi,stavudine, etc when you were taking them did it feel as though they were toxic?
I know the older meds had more side effects than the newer ones so I'm not sure if I'm writing this correctly.
It felt toxic to me . AZT at the doses back them was nothing short of horrible .
All the D drugs DDI etc. made my very ill and I fared no better with the first 3 drug combo . I lost allot of weight and was so sick I could not work or be away from the toilet .
The first drug I ever tolerated without feeling very ill was sustiva and it came just in time for me as I don't think I had months left at that time and was so sick .
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This may sound like a basic or silly question but for those who were on the meds known to cause problems azt,ddi,stavudine, etc when you were taking them did it feel as though they were toxic?
I know the older meds had more side effects than the newer ones so I'm not sure if I'm writing this correctly.
Yes for most of the early ones. I was also in the AZT trial and taking that mid-afternoon dose at work was the most awful experience. Within 2 hours after dosing, I just wanted to lay down and sleep, it was horribly difficult to keep a job. I was also in the Interlukin II study and that stuff felt like drano running through your veins. The side effects were intense and you had to have a buddy, watch over you for the five day treatment, to make sure you got your tylenol every four hours and water and whatever food you could hold down.
Nothing however, prepared me for liquid Norvir, which tasted just like kerosene mixed with gasoline and the only thing that could kill the taste were Rolos. I knew some of the combos were simply toxic, but it still beat being dead. Whatever does not kill you, makes you stronger and all that stuff.
Joe
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Oh, I guess I should add that I was one of the early ones that had a seriously bad reaction to ziagen when it first came out. I think they have a test one takes for hypersensitivity these days that didn't exist then, but my doctor took me off of it within days so it's not like it ruined me life. This would have been end of '98/early '99.
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I am confused about who this is directed. I first thought this was about those who have the luxury of holding off on meds, because they have pretty good numbers. But, he mainly talks about his situation and other LTSers.
Wouldn't an UD vl be important for him, since he's on meds? He says he current vl is 50k and then gives his CD4, saying that's been the level for many years. Is he carrying that vl, despite being on a complete regimen now? Wouldn't he have resistance, if that's the case? I'm confused on this. I mean, you cannot have that vl for long and not develop resistance, right?
He didn't really discuss those treatment naive and weighing when to start, due to possible longterm side-effects. So, it seemed he was talking about someone longterm infected on meds, but having a detectable vl??
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Maybe he already has resistance to whatever regimen he's on, or partial resistance.
You know, from the time I had my first genotype when they became available (~2000 or 2001) until the ones I had in 2006 before I went on Fuzeon I think my profile stayed the same, and I was (unintentionally) in the same boat where my cd4s were either consistent or actually increasing and my viral load was stable or didn't vary by more than one log, say ~25,000 to ~40,000 and I'd had that same viral load number from the time that testing became available in 1997.
But yes, if he suddenly changed to a new regimen with different classes of meds and didn't take full doses his genotype profile assuredly would change and show new resistance issues. Or at least logically it would, nothing is guaranteed of course.
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It's fair to be pissed if you had to take any of the d drugs, but this article is not reflective of modern therapy.
And yes, an undetectable viral load is important, it's the point of treatment, but it is not the end if you don't get there (well, not for a while, perhaps even long enough for a good, happy life).
- matt
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Well, this is all a little ... disheartening for a newbie like me. But I get that we all have health care providers, television commercials on Logo, news stories, etc, that tell us "just take your pills and you'll be fine" when we know this is not fully the case. I try not to worry, but I am known for being a worrywart. And I do worry about what the author is talking about -- who knows what they're going to find out about the current drugs years down the road? I also worry about the things he talks about that the virus is doing to cells, even when its undetectable in the blood tests. Our doctors don't have all the answers or even all of the questions. But what can we do? I am doing well with not being too cynical or losing hope around all this. It's just that following the doctors orders is not all there is to it, and knowing that things are going to come up on down the line (5, 10, 20 years, more, less) from the medication and/or the virus itself is a little bit of a drain one's current state of mental health.
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knowing that things are going to come up on down the line (5, 10, 20 years, more, less) from the medication and/or the virus itself is a little bit of a drain one's current state of mental health.
It's still far better than not having any effective treatments to take and therefore facing a certain, painful, horrible death. You might want to read about the early days before effective treatments so you can gain some much-needed perspective.
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If you want to see it as a glass half full way you are seeing a doctor and being monitored much more closely than HIV negative people and that means any health conditions HIV or other wise will be caught and treated much more quickly than the general population .
Living with HIV can be high maintenance some time and the stress you are feeling is part of it so its a good thing you are here talking about .
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There is not much sense worry about thing that "might" happen until they happen, especially if there's a 95% chance that they won't happen.
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It's still far better than not having any effective treatments to take and theto sound acing a certain, painful, horrible death. You might want to read about the early days before effective treatments so you can gain some much-needed perspective.
I didn't mean to come off as not understanding that things are leaps and bounds better and more hopeful for HIV positive people today than in years past, or to sound ungrateful for having treatments that are not the horrendously toxic kinds from the early days, or for having treatment at all.
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The early meds did feel toxic to me. AZT and 3tc, and the d's made me nauseous, vomit, and started the horrible neuropathy I have now. I remember banging my feet on the wall trying to deflect the sharp pains. That was before they really knew how to treat neuropathy (not that the treatment is that advanced now).
When Crixivan came out, within a month I had lipodystrophy, people asking me if I was pregnant. It was awful, and I still have a small gut that my doctor said will always be there.
But I feel as Ms P does, I hate to constantly fret about something that may not happen. Stribild is a walk in the park compared to the early meds, and I'm just happy they continued pressing on with research, coming up with better meds.
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Isn't being UD the aim of the treatment? Am I wrong?
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Isn't being UD the aim of the treatment? Am I wrong?
That is correct, you are not wrong . I have never heard any convincing argument otherwise .