Treatment Review; Double Issue #26 & #27 November 1997

If you're experiencing these types of symptoms you should promptly report them to your doctor. The Network will provide updates on these problems as new information becomes available.

Wasting is the term used for severe weight loss in people with HIV. This weight loss can be a direct result of HIV infection or can be caused by opportunistic infections. Wasting mainly involves loss of important muscle tissue. Muscle tissue is where proteins get stored for use when the body needs energy. In wasting, the body uses up these proteins and cannot easily replace them. There are changes in the way the body breaks down food so that proteins do not get stored in the muscle tissue in the normal way.

Although there have been reductions in cases of wasting since more effective anti-HIV drugs have become available, Network members who are taking protease inhibitors in combination with other antiretrovirals are sometimes still seeing what appears to be wasting - thin arms and legs, big bloated bellies, more fat than usual in the stomach. Their T4 cell counts have gone up and their viral load has gone down, often to unmeasureable levels. So why are they losing muscle tissue? What exactly is happening?

The Network spoke to a leading GI doctor about this. He too is seeing people who are taking protease inhibitors but still having symptoms of wasting. The weight loss can also appear in the face - in the temples and cheeks - particularly in small people. Although Crixivan was the first protease inhibitor known to cause a big belly, including a lot of gas, the same side effect is now being reported with the other available protease inhibitors.

His thought is that there is an underlying change in the metabolic system caused by HIV. The metabolic system is the way your body digests food and turns it into energy and waste. The change caused by HIV in this system doesn't go away when protease inhibitors are added. In other words, HIV causes something to happen, in this case the big belly and the skinny arms and legs. Take away the HIV and you're still left with what's happening. The protease inhibitors may stop HIV from infecting more cells, but they don't reverse the metabolic change that has already begun.

The Forum For Collaborative AIDS Research in Washington DC, which works with community groups, researchers and pharmaceutical companies, is developing a clinical trial to find out more about this syndrome. Right now, there are no answers - only guesses as to what may be happening.

If you're experiencing some effects of wasting - in your face, your arms and legs, or a big belly - get in touch with the Network and let us know. We can pass the information on to the Forum, anonymously of course, in order to support the development of a clinical trial to answer some of these questions.

In addition, The Network co-sponsors monthly community forums with the Community Research Initiative on AIDS, Gay Men's Health Crisis and the Treatment Action Group. The forum in January of next year will provide the latest information about protease inhibitors and wasting syndrome. Invited speakers are Don Kotler, MD and acupuncturist and Chinese medicine practitioner Jackie Haught.

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