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Being Alive

More on IL-2


Being Alive 1995 May 5: 4

(Last month the Newsletter included Walt Senterfitt's report on the NIH's study of IL-2. A regular reader in San Diego found that article "too weighted in the negative." With his letter, he enclosed the attached article "to provide a more balanced view of IL-2.") I was fortunate in July 1993. I happened to be at the right place at the right time. NIH (National Institutes ofHealth) in Bethesda, Maryland, was recruiting candidates for a new interleukin-2 (IL-2) clinical trial. Early intervention certainly pays off, just like it does with cancer and other diseases. Eighteen months later, preliminary findings of this IL-2 trial show that those with a 400-500 CD4 baseline will tend to respond more dramatically than those with a 200-400 CD4 baseline.

Early intervention is a wise step. If you can blast an immune system with IL-2 when it's only 50% damaged, for instance, it can still help restore itself, as compared to a system that may be 80% damaged.

It seems that HIV patients needs a balanced approach: reducing the viral burden and restoring the immune system at the same time. The benefits of IL-2 can be varied. I've had eight infusions in an 18-month time period. It appears to have a "locomotive engine" effect on your system. That is, smaller increases in the beginning, followed by larger increases, as time goes on. It has potent effects on B-cells, T-cells and natural killer (NK) cells.

Initially, I was doing infusions every two months. Recently, I had sustained increases for up to four months. Specifically, I maintained a CD4 range of 1026-1274 during that four month period. So, an infusion may "still be working" during a resting period of four months between infusions. Some patients sustained their increases for up to eight months. By boosting your B-cells, T-cells and NK cells, you're restoring and preserving your immune system. With a restored immune system, there's less chance of being challenged with opportunistic infections. Perhaps this is the true clinical benefit of the infusions in the long run. The preservation of the architecture of lymph nodes is very important. Studies of lymph node biopsies are currently being conducted. Current findings show that "bone marrow-biopsy specimens obtained after the completion of IL-2 therapy had more 'normal' lymphocytes, than specimens obtained before therapy," according to researchers.

Over the 18 month period, we have reduced my dose from 18 million units per day to 12 million to 6 million to 3 million units per day, for a five day infusion each time. This has helped reduce side effects and made the infusion process more manageable. I'm still getting CD4 increases from the 3 million units per day, which demonstrates that, at least with my particular body chemistry, smaller doses will still result in benefits in the lab results. During the 18 month period, my lab results include: CD4 percentage increase from 18% to 49%; absolute CD4 count increase from 324 to 1274; the branched DNA test has been maintained at less than 10,000. There are always side effects to any effective therapy. The side effects vary widely from one individual to another. Usually, the real challenging effects are during the infusion. Once the infusion has ended, different side effects may develop for four to five days, and then disappear. The side effects after the infusion are less severe than during the infusion process.

During the five days of infusion, side effects may include any of the following: rash, fatigue, muscle and joint aches, nausea, diarrhea, headache, and nasal congestion. These effects are treated to reduce discomfort. Again, everyone seems to have a different set of side effects. Is it worth the side effects? Of course, it is! The benefits of this process certainly do outweigh the side effects.

Your only financial investment in a NIH clinical trial is your first airfare expense to Washington, DC. They screen you carefully over the telephone before you are accepted for an initial interview in Washington. Once you're accepted into the trial, after lab work and screening interviews, hotel and airfare expenses are taken care of by NIH. Typically, blood work and check-ups will be done every four weeks at Bethesda, Maryland, just northwest of National Airport in Washington. It is easily reached with the great subway system from the airport.

Most trials initially involve an infusion for three, four or five days every eight weeks. The hospital staff and doctors are terrific. At times, you may have a chance to personally visit with the lead researchers, Dr. Kovacs and Dr. Clifford Lane (world's leading researcher of IL-2 since 1983), and the Director, Dr. Tony Fauci, which makes life very interesting. Restoration and preservation of the immune system are crucial for effective HIV management. Maintaining the architecture of the lymph nodes is imperative for controlling viral burden. Patients in an earlier study who had lower branched DNA levels before and during therapy had the most dramatic increases in CD4 counts. So, there appears to be an inverse relationship between viral burden and the degree of responsiveness to IL-2. Dr. Clifford Lane thinks IL-2 merits further research as a treatment for patients with other "diseases that are characterized by decreased T-cell function, including infections with fungi or mycobacteria." Finally, my success with this therapy is not an isolated case. I urge those who are currently in the 200-500 CD4 range to seriously consider participating in a clinical trial. NIH is currently screening candidates for three new studies. You can get information by calling 800.772.5464, 8 am - 4:30 pm, Eastern time.


Information in this article was accurate in May 5, 1995. The state of the art may have changed since the publication date. This material is designed to support, not replace, the relationship that exists between you and your doctor. Always discuss treatment options with a doctor who specializes in treating HIV.