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to be (on meds) or not to be? - AP
Feb 11, 2001

I tested positive May of 2000. I began meds in January 2001. I am taking one drug from each of the major class of drugs: epivir, sustiva and viracept. My last cd4 counts fluctuated from mid 400's to mid 500's with my viral load leveling off in between 10,000 and 20,000. Since I started my meds all I have heard from positive people is that I am insane or my doctor is... My best positive friend (high on a nasty drug the other night) demanded: stop taking the protease inhibitor! Who should I listen to?: my drug addicted friend or my doctor? One person wants to know why I am taking epivir alone and not with another drug in it's class? I love this one from a positive co-worker: "if it's not broken don't fix it". (but it is broken silly) Another convincing argument is that doctors try to push meds on patients without giving the body/immune system time even to react to HIV. A counter argument to this that I've heard (mostly from doctors/health care providers) is that within one year of infection a specific type of t-cell is killed of and the chance of getting these back is impossible. Coupled with this is the common point that if the viral load is kept low, fewer t-cells will be killed which somehow is transformed into a theory that one will live longer. So what's the deal docs? With so much blatantly contradicting info out there what's a poor positive person to do?, except laugh and hope for the best and keep swallowing (pills)? If you need specific questions here they are: Should I be on a protease inhibitor this early? Is my doctor mad? Shouldn't I be saving the p.i. for later in the battle? Why was I given epivir alone with combining it with another drug from it's class which seems to be common? and is this wise? Should I listen to doctors or other HIV positive people? or both? or neither? How do I know who's interests are being served? The pharmaceutical companies? The researchers? The doctors? Mine? I really just need answers to the meds questions (since I'm on them already) but this is all that is on my mind at the present moment.

Response from Dr. Pavia

What's a poor positive person to do indeed. You are up against one of the areas where all of the answers are not in, so you get strong opinions with little fact. Here are a few facts that may help, but this is an area where we need more info.

1. During the first few months, the CD4 helper cells that initially learn to lead to battle against HIV are lost and don't appear to be recovered. It appears, from limited data, that starting therapy very early on, such as during symptoms of acute infection and before the antibody tests are fully positive, does block this and may set the stage for your immune system to control HIV better over time. The problem is, how early is early? If you tested positive in May, and don't know when you were infected, then you started more than 8 months after infection, and the early treatment argument may not apply to you.

2. I am not a big fan of using all three classes in the first regimen. The regimen you are on has the particular problem that all three drugs require only one mutation to develop resistance. If you have problems with a triple class regimen, you may have burned a lot of bridges at once. It bugs me that you are not fully suppressed on this regimen. If I can assume that you are taking all of your meds on time all of the time (my colleague says that when you assume, you make an "ass" out of "U" and "me"), then you may have developed some resistance already. I would go talk with your doctor, assuming you like him/her and they are experienced at treating HIV. If not, you may want to get another opinion at a clinic or practice with a lot of HIV experience.

The question of who do you listen to is important. Some people living with HIV are extremely knowledgeable and can be real experts. However, a lot may be more like getting expert car advice from Uncle Sid... Your stoned buddy may not be the best source. Not all doctors are as knowledgeable as they could be either. But the hardest issue to grasp is that we are still learning things at an incredible pace, and some of what we think is right today will be proven wrong as the research progresses. We (the medical "experts") need to be humble about what we know.

Educate yourself, but be a cautious consumer. Like any good scientist, check the source, make sure that the advice is reproducible (that is, do you get the same info from several reliable sources), and keep checking on the results. This is still not an easy disease, and never will be.

Good luck

ATP



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