The Bay Area Reporter - Friday, January 15, 1999
Phillip Alden, ACT UP/Golden Gate Writers Pool

Some people with HIV have been on continuous drug therapy for years. Ted (not his real name) is one of them. "I started taking AZT monotherapy about five years ago, right after I tested positive for the virus," he says. "When the first protease inhibitor, Saquinavir, appeared on the market, I went on combination therapy."

When viral load testing first became available, about the same time that Saquinavir came on the market, Ted's CD4 count had fallen below the 200 mark and his viral load was 112,000. "When I got the test result I thought, 'This is it, I'm going to die.' I jumped at the chance to take the new therapy, even though my doctor warned me about the potential side effects. He told me that I would likely experience major stomach and gastrointestinal problems right away, and that he had no idea what the long-term effects might be. He said that there was the possibility of major organ failure down the road." Ted decided to take the chance. "I watched some friends suffering painful, prolonged death. To my mind, anything was better than that."

Ted's decision turned out to be a good one for him. For the past four years, his viral load has dropped to almost undetectable levels and his CD4 count has risen and remained steady. The only opportunistic infection he has experienced was an oral yeast infection, known as Candidiasis, which cleared up within a week.

The side effects of the HAART therapy have been hard on Ted, though. "When I first started, I was on the living room floor clutching my stomach in pain," he recalls. "The only drugs that could cut through the pain were opiates, and I've never met a doctor that wanted to put a patient on opiate painkillers over the long term." After a time, the pain became tolerable. "I've learned a lot about pain, and my threshold for pain has risen over the past five years."

When Ted's viral load began to climb again, he was switched to Crixivan, a more potent protease inhibitor with stronger side effects. "Every generation of drugs seems to become more potent, and by extension, more toxic," he told me. "I never experienced the lipodystrophy [fat redistribution] that some people have suffered on Crixivan, but my stomach paid the price." When the San Francisco Cannabis Buyer's Club opened its doors, Ted found an effective way to treat his stomach pain and nausea, and increase his appetite. "I never thought of smoking pot before the buyer's club opened." Thanks largely to the draconian drug enforcement policies of the federal government and political game-playing of former California Attorney General Dan Lungren during his unsuccessful bid for governor of California, the Cannabis Buyer's Club was forced to shut its doors. Fortunately, Ted has a number of friends and acquaintances who know where to find marijuana, but not all people who need medical marijuana are as lucky as Ted. (There is a pill form of marijuana known as Marinol, but its properties make it a much less attractive option.)

Another factor in HAART therapy is increasing toxicity. It's a widely held belief that anti-HIV drugs build up inside the body, increasing the risk of serious and permanent organ damage. The problem has been that, with HAART therapy, once you start taking the drugs you cannot stop. If you do, the virus will mutate and become multi-drug resistant. When Ted was initially offered the option of drug therapy, it was understood that he would be taking these drugs for the rest of his life. "After four years of taking multiple drugs, three to five times a day, and taking additional drugs to counteract that side effects, I was getting pretty damn sick of pills." Although frustrated by the forced routine, Ted appreciates that the HAART therapy is helping him stay healthy and active. "I'm actually grateful for these drugs," he says, "even though it's a love-hate relationship."

So where does the medication vacation come in? "When Norvir became unavailable in pill form due to manufacturing problems, I discovered that I couldn't tolerate the liquid form. I had no choice but to switch therapies again." Ted's doctor decided to perform a genotypic assay, a test that measures potential resistance to the drugs Ted has been taking, to determine what drugs Ted had become resistant to. Because Ted's viral load was still relatively low and his CD4 count was within an acceptable range, Ted's doctor offered to take him off the drugs while they waited for the results of the test. This gave Ted almost four weeks without any anti-HIV drugs, though he is now back on a new regimen. "It was wonderful," he recalls, "within a few days my appetite came back big time. I didn't have to smoke any pot or take Pepcid or Imodium," over-the-counter drugs that combat nausea and diarrhea.

There are some factors to consider. If your viral load is high and your CD4 count is low, a medication vacation might increase your risk of developing an opportunistic infection. The only wise course of action is to talk to your doctor. If you do go on a doctor-sanctioned medication vacation, monitor your own health consciously. The human body often gives very clear signals if you pay attention to it. Do not take a medication vacation without your doctor's approval! I cannot stress this enough. Only your primary HIV physician, the person who has been tracking your progress over time, can make that determination.
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Always watch for outdated information. This article first appeared in 1999. This material is designed to support, not replace, the relationship that exists between you and your doctor.

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