B99:
Wow, J.R.E you've been positive for 21 years. Was 2003 the first time you took any kind of treatment? What was the issue with the Zerit? Side effects?
jkinatl2:
<<Maybe my Dr. is too optimistic. But according to him, drugs should never fail if you are adherent. >>
Does he take into account long term side effects? Slow mutation over time? I suppose he has a point if you are really, seriously willing to stretch the words "never" and "fail."
It sounds like he is not only being awfully optimistic, but setting his patients up for serious disappointment and self-blame if and when their combos DO fail. This board really is packed with people who, over time, experienced treatment failure despite acceptable adherence.
One of the troubling things about the meds and dr's views of them is the simple fact that we are STILL in long-term studies regarding HAART. In a very real sense, we are the guinea pigs for it.
The OP asked if anyone was still on the same combo for twenty years.
We have not even HAD HAART for twenty years.
Less than fifteen years ago, AZT monotherapy was the standard of care.
With the FDA fast-tracking the protease inhibitors, they landed on the market about eighteen months past the inception of preliminary human testing. So any information we have on their long-term efficacy (and long term side effects) is either theoretical or based on MAYBE eleven years of patient tracking.
I think we need to keep that in mind when we are being fed advice from professionals OR from our peers. This is new science. Every year we expand the boundaries of knowledge exponentially.
It is quite possible that a person starting drug treatment today, in 2006, will indeed spend the next ten years or more without changing drugs. And might only change therapy because it's been streamlined and refined to make it easier and less intrusive.
I am a big believer of optimism, when it is quantified by scientific data.
B99:
In response to long term side effects: though HIV medications are different from diabetes meds, cholesterol meds, etc, a lot of the concerns about the long term effects are things that you here people talk about for any type of drugs. Mainly toxicity. With all medications, they are foreign products entering the biological being of your body, and just like all medications your body will try and get rid of them. Now how much damage the medicine does is probably related a lot to the individual. And some of these effects my take decades to materialize in any real way. I like people thinking about these things and being concerned, but not to take it to extremes. Just like people are blasting the health risks of caffeine, sugars, etc. for long term effects. People have been drinking coffees, eating sugar for centuries (if not milennia) and have lived normal lives. And not to compare apples and oranges, but they are both fruits. Some are "natural" objects entering the body, some are "man-made" compounds. And just as we injest mocha lattes and diet cokes, we injest medical drugs that are keeping a lot people, with all kinds of ailments, alive. (And have been for decades) Be concerned, but be grateful. (And to be fair to those on medications, I am not yet, but it sounds to me like for a lot of people they are working fine. Just wanted to be an encouragement. :))
jkinatl2:
Actually, I would be interested in hearing about other meds taken for a lifetime that cause lipoatrophy/dostrophy, neuropathy, and other potentially debilitating, even fatal interactions over time.
I think HIV meds have given many of us a new lease on life, don't get me wrong. But pretending that these are not some of the most toxic, most demanding lifelong chemotherapies known to man would be misstating their powerful nature.
Seriously, You can't compare a decade of 3TC or Crixovan with a decade of drinking coffee.
aztecan:
Hey all, I've been on the same combo AZT, 3TC (Epivir) and Crixivan, since May 1996. I originally started with Saquinovir in March of that year, but had nasty side effects from it and, when Crix became available in my area, switched to that. I didn't even have to go onto the waiting list that so many others had to be put on.
Been undetectable since June 1996. My January CD4 was 1,462. Tested positive in 1985.
As for side effects: Had "sludge" in my kidneys as a result of the Crixivan. Began drinking copious amounts of water (64 ounces a day) and the problem went away.
I have readily visible lipoatrophy, but part of this is due to the fact that I was always thin and any fat loss is readily noticeable.
No sign of lipohytropathy as yet. I keep watching.
Lipid levels are a concern. When I see the doc next Wednesday, he and I are going to talk about niacin therapy. He doesn't know this yet, but we are.
Was on Vytorin, but it did nasty things to me, so my doc told me to stop after six weeks.