Lipodystrophy syndrome(s)

November 2001     View PDF     En español

Commentary

Ongoing reports of changes in body shape have raised questions about the long-term benefits of potent anti-HIV therapies vs. quality of life issues. People may also meet others who notice these physical changes and assume they’re HIV-positive. These and other issues, like increases in triglyceride and cholesterol levels that theoretically increase the risk for heart disease, have made many people re-evaluate when to start anti-HIV therapy.

Many people who develop these symptoms are considering whether to switch or stop therapy completely. But the benefits of potent anti-HIV therapies are indisputable. Death rates and the numbers of opportunistic infections have decreased dramatically. However, the right time to start anti-HIV therapy is not known. Some researchers and clinicians who earlier advocated for starting therapy as early as possible have changed their views.

What causes lipodystrophy is not known. But one thing is now clear: protease inhibitors are not the sole cause. Controlled studies with adequate numbers of men and women must be conducted under a single definition of lipodystrophy before hard conclusions can be reached.

There’s an incredible sense of frustration among people with HIV-related lipodystrophy because of all the uncertainties they face. While a large amount of work is presently going on, we may not get any information on what causes lipodystrophy or how to treat it for another year or more.

If you truly have lipodystrophy, it’s important to consider all the positive results that have been attained with potent anti-HIV therapies while factoring in these and other potential side effects that have not yet been discovered. Remember, lipodystrophy is not the same thing as the “spread” or “love handles” that people get as they age. It’s also important to talk to your healthcare provider—and if at all possible an expert in this field—when coming up with a strategy that’s right for you.