Wasting Away: Coming off Combos

By Stephen Rogers
Continuum Midwinter 1998-99

An AIDS patient looks back at the horrifying sickness he went through in the name of health and wonders what, exactly, is so wondrous about drugs that decimate the very quality of life they're supposed to preserve.

"These new protease inhibitors are marvelous, pretty soon everyone will be on them," my consultant enthused with a dramatic flair that would put Gielgud to shame. The year was 1994. It was the first time I remember hearing about these "wonder drugs" that were heralded as a new treatment, even possible cure, for AIDS.

She was not the only one to have become intoxicated by all the hype. The doctor also eulogized at some length, "At last we have a method for dealing with things with the viral load test and combination therapies. It's just a matter of finding the right combination for you, and when that stops working, we just switch it. The possibilities are endless with more and more drugs in the pipeline." Quite a sales pitch. "So I might be around to see in the year 2000,' I replied sardonically, totally unconvinced.

"Oh, I think I know how you'll be celebrating."

As protease inhibitors had yet to be licensed for use, the only way of accessing them would be to take part in a two-year trial, at the end of which the drugs would be made available on a named-patient basis -- that is, if they worked. But the way in which it was said was as if this were a foregone conclusion, and they were doing an enormous favor by granting me early access. I remained unconvinced, and so the sales pitch intensified. "We know you're well (asymptomatic) now, but we want you to stay well." They took such a personal interest in my well-being -- so touching. But how could this be used to justify going on a trial? After all, I could be put on placebos, and the main point of a trial was to establish whether or not the drugs worked.

The clinic appointments would consist entirely of berating me and attempting to erode my resistance to the point where the visits would fill me with dread. The one argument against AIDS drugs in general that I clung to was the stories about the side effects of AZT, the crude, chemotheraupetic drug that had been resurrected as a treatment for AIDS. There were many tales of AZT's ineffectiveness, but as I had no actual proof, my argument soon crumbled. Again my doctor jumped in with the sales pitch: "I know people who were on the Concorde trial and are fine. Just take it with a few biscuits, no problem." What he neglected to mention was that there had been a 25 percent increase in the mortality rate of those who took AZT on the trial. That AZT, being a cytotoxic drug, destroyed the bone marrow, causing anemia and resulting in the need for blood transfusions and consequently, suppression of the immune system. That AZT can cause non-Hodgkins Lymphoma, a virulent form of cancer of the immune system, and after three years, there is a 46.4 percent chance of developing the condition. If I'd known these facts, I would never have agreed to go on the trial, but I didn't, and after all, doctor knows best -- at least that is what we are taught to believe. And so in March of 1995, I relented and agreed to take part.

The trial consisted of AZT, ddI, both nucleoside analogues, and the protease inhibitor Saquinavir. Neither I nor the hospital would know if I were on drugs or placebos; also the viral load would be known only by the pharmaceutical company. Immediately upon starting, my T-cell count plummeted and remained at the same low level. I was told that without the drugs, it would fall even further, but how could they say that when I might have been on placebos?

At the end of the two years, it was revealed I'd been on AZT monotherapy for the first six months, then a three-drug combo for the rest of the trial. If someone had asked me during the trial if I'd suffered from any side effects, the answer would have been no, but with hindsight of knowledge, the same could not be said. During the first year, I'd needed one blood transfusion although the reason for it was never fully explained. During the second year, I experienced a mild attack of shingles. It has recently been revealed that there is a five-fold increase of shingles among people on combination therapies. Worst of all I became affected by the condition lypodistrophy. I'd begun to notice changes in my body shape. A slight paunch developed, and my upper arms became thinner although the muscle definition increased. The veins of the lower limbs began to protrude, and the skin on the thighs became more translucent. All this I put down to my imagination as at the time I hadn't even heard of the condition. Then in 1997, referred to as "Crix Belly," said to only affect those on Crixivan, I read of the condition. But as time went by it emerged that lypodistrophy was a major side effect produced by all protease inhibitors.

By this time, the clinic possessed an entire menu of drugs to play around with and therefore decided to change the combination to Ritonovir, 3TC and 4DT. They could also now carry out their own viral load test and so decided to make use of this new toy by doing mine. The result came back 24,000 "copies," a reasonably low level. My doctor surmised the load must have been incredibly high at the beginning of the trial, as I'd been diagnosed in 1990, and that it had fallen throughout to the present level. But when the results were finally released, they did not bear this out and instead showed a constantly fluctuating low level. Upon seeing this he quickly shoved the paper into my file before I had a chance to see it further.

As with the first combination, I raised concerns about the drugs, specifically Ritonovir. A long, in-depth article had just been published in Rolling Stone that looked into the effectiveness of combination therapies centering on David Ho's attempts to eradicate the virus, which made his subjects very sick in the process. More poignantly it also mentioned some people had died from liver failure while on Ritonovir. Once again my doctor brushed these concerns aside as if I were crazy for even raising them. He did, however, warn me to expect dire side effects from the Ritonovir for the first two weeks. Parceling me off with packets of anti-sickness and diarrhea tablets, he reassured me I'd be fine. Ironically, the first two weeks brought no ill effects -- only after this period did the onslaught of side effects really kick in. Numbing tingling in the lips, burning sensation on the upper forearm, lethargy, insomnia, crippling stomach cramps and chronic diarrhea. Then a strange feeling I find hard to describe, like feeling hot and cold at the same time and everything closing in, almost to the point of blacking out.

Admittedly most of these effects would only occur at regular intervals, a few hours after taking the drugs; the rest of the time I'd be reasonably fine. With the stomach cramps, which sometimes woke me during the night, I would just have to grit my teeth, knowing that after a few seconds they would stop. The diarrhea presented different problems, creating an anal faucet -- the anti-diarrhea tablets only controlled the flow and did not abate it altogether. My doctor tried to blame a parasitic infection, but when the samples came back clear, he had to admit the drugs were the culprit. He assured me the diarrhea would go away after six weeks. It did not.

The lethargic, sluggish feeling might have had more to do with having to eat two large fatty meals a day in order to take Ritonovir -- not a very healthy pursuit. The doctor pointed out a rise in my cholesterol level and said this was to be expected when I took the drugs -- nothing to worry about. It is now known that people on protease inhibitors experience heart problems and blocked arteries that sometimes require surgery. I remember thinking, as I would feel a slight twinge in my chest, I'm more likely to die from a heart attack than AIDS.

"It is important to restore a person's quality of life," was one of the major selling points for the drugs. Well, all they succeeded in doing was to decimate any quality of life I possessed. No longer having the energy to go to the gym, a regular part of my social activity, no longer able to go out as much because of toilet problems, I lost count of the designer underwear ruined. No longer able to enjoy meeting others because of worries of an embarrassing and messy accident, I would now spend my days lounging about, watching cable TV and popping pills. The practicalities of taking the drugs at certain times, with meals or with liquid, also made conducting a normal life impossible. All this only added to the feelings of depression and isolation.

As my viral load stubbornly refused to go down to undetectable, the doctor decided to reintroduce the Saquinavir. Although this protease inhibitor had proved to be ineffective in its old formulation because it was poorly absorbed, combining it with Ritonovir was said to increase its absorption 40 times, even though they didn't know what effect this amount would have on a person. It is now accepted that if someone on one protease inhibitor is suffering from side effects, then adding another will only increase the suffering. This is precisely what happened in my case. I developed a skin abscess, which swelled to the size of a golf ball and then burst, oozing pus, then blood, then a combination of both. My doctor tried to blame it on my sexual pursuits and spoke of sending me to the surgeon to have it cut open. Skin abscesses can be a result of a buildup of toxins in the body, and it is now believed they are yet another side effect of the drugs.

My clinic appointments now became torture. They had increased in frequency -- whereas before they had been once every two to three months, they were now occurring every two to four weeks. I began to feel more like a lab rat than a person. I would look around the burgeoning waiting room, now standing room only, thinking the drugs can't be working. I would overhear snippets of conversation from others suffering, a very different picture from that painted by the propaganda. My doctor would now spend the entire session reasserting over and over again that I was on the very best treatment, the "gold treatment" as he would call it, and if I failed on this, that would be it for me. A very different tale from that of endless combinations told to me a few years earlier. I would leave the hospital thoroughly demoralized and would spend the weekend feeling suicidal. Only these punitive sessions would make me adhere to the drugs.

The mountain of capsules and pills in the palm of my hand now filled me with dread. Each time before taking them I would pause and think these drugs are killing me. I had a strong gut feeling, both literally and figuratively, which conflicted with the rhetoric of my doctor and the pharmaceutical companies. I felt confused and frightened with no one to turn to. Organizations set up to help people like me had now become nothing more than shadow puppets, projecting the images of living longer and better on combination therapies with no actual substance to their claims.

What I needed was information, something I felt had been denied me. I was constantly being fed one side of the argument, only being told what they wanted me to know. Despite this, stories were seeping through the barrier set up by the orthodoxy regarding the mounting side effects, people dying and the true reasons for people with AIDS living longer -- the real causes. What I had been denied was the basic right to make an informed decision, which without a full grasp of the facts could not be achieved. And so instead of accepting the situation as many do, I pursued a relentless quest for the truth, constantly asking questions and looking for information.

The one thing that provides any credence to the drugs is the viral load test. The result of this is used to convince someone that they are riddled with a deadly virus, and when the result goes to "undetectable," it is used to convince someone that the drugs work. It certainly worked on me. But when I learned the viral load test is highly inaccurate, that it basically picks up scraps of genetic material and amplifies the result, I lost all faith in the drugs. My fear had been replaced with anger at being duped into taking a course of medication on the basis of flawed test results, medication which if anything had taken its toll on my health. I made the decision to stop taking the drugs.

Within weeks I felt better, the diarrhea dried up, the skin abscess cleared up, the stomach cramps disappeared and my T-cell count shot up. I had become unaware of the malaise I'd sunk into through the years -- like with any drug, whether pharmaceutical or recreational, you become so used to the effects they induce that they become an accepted state of being. You become unaware of the damage being done. People who say they are doing well on the drugs are often unaware of the destruction taking place within their own bodies. The nucleoside (AZT, D4T, 3TC, ddI, ddC) interferes with DNA, the very building blocks of life, effectively killing T-cells. The drugs destroy protease enzymes essential for some basic functions in the human body. All this in the hope of preventing a retrovirus from replicating. They are not anti-virals, they are anti-life.

At the final visit with my doctor, I lacked the courage to tell him I'd stopped, afraid he might begin berating me again. Then fate stepped in -- my last viral load, taken prior to cessation, had shot up dramatically. He took this as a sign that the drugs were no longer working, a victim of his own tests. He failed to take into consideration the fact I'd had the flu at the time. His blind faith blinkered him from the more likely explanation that the result had been affected by the flu, and not by an increase in HIV activity. I kept quiet and breathed a sigh of relief that my doctor would now make the decision to take me off the drugs, but the relief soon changed to despair when he announced he now wanted to put me on a combination of five different drugs. It has now been revealed that there is an increase of opportunist infections among those on "quintet" combination therapies. I held nothing but contempt for my doctor and never saw him again.

It cannot be said that these drugs were responsible for keeping me "well" for those three years as the doctor would like me to believe. The first two years had been a trial run with a combination that is no longer used due to acceptance of its ineffectiveness. The final year had been plagued with ill health, and the drugs had failed to achieve a sustained undetectable level. If anything I am now well in spite of the drugs, not because of them.

The decision to stop taking the drugs is a difficult one in the face of pressure from the clinic, propaganda from the pharmaceutical companies and organizations funded by them, and the media hype. You really have to believe in yourself, take responsibility for your own life and just let go. Like Dumbo who believed he couldn't fly without the aid of a feather, once he let go, he realized he could. Once you take that leap of faith, you realize there is life without the drugs.