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Life Wish

tagline 1999

AZT Monotherapy Veteran Checks out Chemotherapeutic Quitsville and Lives to Tell About It

Don't try this at home

In a recent highly unscientific and egregiously self-selective poll of HAART-experienced individuals (N=15) in New York City (most of them aging activists), a surprising 33% were no longer on their triple or quadruple or "mega-HAART" antiretroviral combinations. Two had gone off antiretroviral treatment when it became clear the drugs were no longer doing the trick -- and that there were no new agents from among which to cobble together another viable cocktail. Two more have maintained themselves (with variably detectable and undetectable HIV titers) on regimens that would today be looked upon with heretical indignation: dual or single nucleoside therapy, with or without hydroxyurea. The other one recently discontinued an arguably beneficial quintuple combo after his blood lipids went through the roof.

None of these decisions was made lightly; and, with the exception of one or two incorrigible outlaws, all plans to suspend or discontinue antiretroviral therapy were discussed in great detail with their medical professionals before the fact. Here we provide one such story, and hope to explore these issues more thoroughly in upcoming issues of

TAGline. The author has requested anonymity.

It's hard to recall a time when I didn't have to worry about what time it was or when I had last taken my pills. From the very beginning, when I first found out I had HIV almost eleven years ago, I jumped on the antiretroviral bandwagon. Even before "Hit it Early, Hit it Hard" had become the industry mantra, it was mine. Since that time, my everyday life has been continuously barraged by a series of when?, what time?, which one?, how many?, and to eat or not to eat?

The first drug regimen I took was as a participant in the now famous ACTG 019 study. I received these cute little bubble wrap cases filled with AZT. Of course, since it was a double-blind, placebo controlled study, neither my doctor nor I actually knew if it was in fact AZT. Even so, I was neurotic about dosing; I didn't want to miss a single dose because this was going to be my salvation. Even though I believed I would be saved, I told myself that it would only be temporary and that, in fact, I would probably be dead by the time I was forty. I remained on this study until its conclusion. After 2 1/2 years of blinded AZT monotherapy (or placebo), my T-cells were still in the 700-900 range. Months later, when my T-cells dropped below 500, it was suggested that I go off study and onto open label AZT. I guess I had reached a study endpoint, and anyway that's the way things were done back then. After that, every little cough or ache or pain convinced me that the end was near. Looking back, I believe I was lucky. I started with a very low dose of AZT (500 mg/day) and had few side effects. Unfortunately, though, my T-cells kept falling.

With my doctor's help I decided to add new drugs to my regimen; that's when the fun really started. Before it had been "every six hours and don't forget." Now it was more pills, different intervals and, yep -- side effects. On low-dose AZT, I hadn't really experienced any unpleasant side effects; the biggest inconvenience then was simply remembering to take the shit. That all changed when I crept from monotherapy to bitherapy. The new drugs were nasty tasting and hard to stomach. I developed large cold sores in my mouth. (HIVID anyone?) This was not much fun. All along my numbers yo-yoed up and down. Again, I figured my days were numbered, and I hitched my fate on the next bunch of miracle drugs to emerge the proverbial pipeline.

I must say I was very conscientious about my pill taking. I rarely missed a dose and when and if I did, I nearly went crazy. During this time I was closeted about my treatment which made the furtive pill taking even more cumbersome. It's hard not to be noticed gulping down a fistful of brightly colored capsules and tablets at a dinner party. I was also involved with new clinical studies: still searching for that magic bullet.

And we found it, or so we thought, in the advent of the protease inhibitors and the now famous HAART triple cocktail. First came Norvir. Other than the side effects and horrendous flatulence, things seemed manageable. But when my numbers took another dip, the mad scramble began anew. I went to see my doctor, and we decided to add saquinavir. During this time there were always other drugs involved in my regimen, but between the 2-3 different names for each medication, who remembers? Well, you guessed it; ritonavir+saquinavir+nukeA+nukeB didn't work so well either. Then, lucky for me, another "wonder drug" (at least that's what the drug company was saying about it) arrived on the scene: nelfinavir (Viracept). I gladly ditched the Norvir for Viracept in combination with d4T, 3TC, delavirdine, and later on, hydroxyurea. All was right with the world again. Yeh, right.

I should mention here that during my tenure as a drug taker my numbers were never really constant. They went up; they went down. My T-cells ranged anywhere from 98 to 787. But, most likely due to the medication, my T-cell counts for the most part remained high. In 1995 when viral load became the number of choice, mine was first recorded at about 325,000 copies/mL. Most people would consider this dangerously high. And only for a 30-day period many years ago, had it ever dropped to "undetectable." Since that time, it has hovered anywhere between 2,000 and 25,000 copies.

As my friend Richard likes to say, it's unfortunate that when high numbers (T-cells) were important mine were low, and now that low numbers are what's "in" (plasma viral load), mine is high. The peer pressure was terrible. I couldn't help thinking I was doing something wrong. For me the Holy Grail of high T-cells and an undetectable viral load was not to be. So sometime last year my doctor and I decided that a more realistic goal for me would be to keep my numbers stable (at least as stable as possible), which is what we've been doing -- until recently.

I had resigned myself to the daily ritual of taking over forty pills. I couldn't leave the house until my meds started to digest. (This was so I wouldn't have any bathroom issues anywhere but home.) I also had to plan my day to the T so I could bring along the 20 or so pills I would need to take if I were not going to be home. It became rote. Humans are highly adaptive creatures, we're told. A highly unusual existence became normal to me. That is, until my numbers started to go through the roof.

And not the numbers you might think. T cells and viral load had remained relatively stable. Blood lipids, though, were another story. My triglycerides inched up to nearly 2,000. And my cholesterol was hovering about 270. That's high! I have to say, at first I didn't really get it. But upon further investigation (combined with the fact that I had always had high blood pressure and a small valve problem) I realized I could have a heart attack. I was 40 years old, and all I could think about was how ironic: all this time and energy treating HIV and fighting to stay alive -- only to then die from a myocardial infarction. This was not the way I had planned things.

Again the question became "What now?" I had few choices left -- or so I thought. After months of continuing my 40 pills a day regimen and monitoring my numbers, I started to have what I felt might be some physical signs of cardiovascular distress. I occasionally experienced a pain in my chest. Was it my imagination, or was my arm starting to tingle? I've suffered from peripheral neuropathy from time to time, but this felt distinctly different. Was it all merely psychosomatic? A neurotic Jewish mama's boy I may be, but I was scared nonetheless. And the numbers don't lie.

Enough was enough. I went to my doctor and voiced my concerns. As usual, he tried to convince me that everything was fine. (Why do all doctors do that?) "You're not having a heart attack, you're too young." But all the while there was an underlying "You could." I had had it. What are my options now?

I had been toying with the idea of a drug holiday for sometime, mainly because I was just so sick of taking 40+ pills a day. Now with all these complications -- and the very obvious secondary threats -- my drug free fantasies became more serious. My doctor and I discussed the possibility of going off everything. I was nervous but excited.

My doctor told me that if that's what I wanted he would go along with it -- and monitor me very closely (viral load every two weeks). We discussed all the scenarios. He felt that, worst case, my T-cells would plummet and my viral load would skyrocket. But even if that happened, he felt confident that we would just concoct another cocktail (sort of like the-check-is-in-the-mail empty promise proferred innocently enough by all too many feel-good healers) and would be able to bring things back in check. So after over 10 years of pharmaceutical enslavement and with much trepidation, anxiety and uncertainty, I went off all meds.

I have to say I was scared. I really didn't know what to expect. At first, oddly enough, there was a kind of separation anxiety. I would open the cabinet every now and then just to look at my pills, as if I wanted them to know that I appreciated what they'd done for me and that even though we couldn't be together anymore I still loved them. The first day off I even snuck a single dose because I just couldn't let go. I wasn't sure where this agonizing experiment was taking me. Terrifying sci-fi resistance stories abounded. And since I had used so many combinations in the past I was uncertain about what treatment options I might have left if this little whim of mine turned on me. There was nothing to do but wait. I had made the decision to stop and I would simply have to wait to see what happened. I waited, two weeks.

Surprisingly, those first two weeks (except for the first day) were relatively painless, and I even think I felt and looked better. Then came the day to draw blood. It was strangely similar to the day I first found out my serostatus. I was playing out all different scenes in my head: I would be cured; I'd die immediately; you name I thought it. The blood was drawn, and then it was another two days for the results to come in. Don't ask; I was on pins and needles.

When I heard the results I wasn't sure what to make of them. They seemed inconclusive. My T-cells dropped slightly and my viral load had gone from 2,000 to 17,000. Had the big experiment failed? It wasn't so clear. These drug-free numbers were easily within the range they'd always hovered about over the past several years. My doctor proposed that, if I could handle it emotionally, he would like to stick it out another two weeks. The idea of not taking all those pills for another two weeks was exhilarating. I said okay. I figured that it was an experiment and that I needed to give it a chance to work. Another two weeks came and went, and I looked and felt still better. Friends were even commenting on how well I looked. Was life great, or what?

We took more blood and waited. When the second batch of results came in, the first thing my doctor saw was that my triglycerides had fallen to 248 (from over 2,000 just four weeks earlier). My cholesterol count was down to 150. Quite normal -- and with no dietary changes. So far, so good. But what about those other important numbers? With a sense of glee my doctor reported that my T-cells had remained stable, at about 600, but that my viral load -- Are you ready for this? -- had fallen to 8,000. I was thrilled. We decided, of course, to wait another two weeks and check it again. If the trend continued, I'd stay off the drugs. The next set of numbers came in much like those prior: T-cells stable at 617; viral load, 9,000. My triglycerides had fallen still further: to 160, and my cholesterol remained at the low-moderate level of 150. My doctor decided we could now check in on a monthly basis. I feel great.

I don't know what the future has in store for me. But then no one in any situation has the luxury of a crystal ball for his life. Trite as it may sound, I can only live my life (as that Manchurian Candidate-esque rehab stint programmed me) one day at a time. It was important for me to take this chance and see what comes of it. I've never really been one to sit back and do what I'm told. If and when my numbers revert back -- which at some point I'm sure they will -- at least I'll know that I seized an opportunity when it presented itself and embarked upon a nice, long drug holiday.