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
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
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,