Being Alive 1996 Aug 5: 9
(I recently had a conversation about side effects with a friend
who had participated in one of the Phase III studies of
intravenous IL-2. In the course of this one year therapy, his
CD4 count went from around 275 to asustained level of 725, a
remarkable rise. Throughout the study he was on antiretroviral
combination therapy, adding a protease inhibitor in March.)
About a day and a half after starting the 24-hour infusions,
you start feeling it. You start getting "flu-like symptoms"-
fevers, headaches. You start feeling pretty unwell. This
persists through the cycle of infusions. Toward the end of the
cycle, you start building up fluids - your skin turns beet red,
gets very blotchy. I would actually get very green around the
gills, too. So my face gets green, my body gets red, it's
really quite lovely. Then I would start getting a layer of
fluids in my skin-this is called edema - and then I would tend
to start to blow up. My leg would get swollen, as would my
body, like with about 10 pounds of fluid.
Once you disconnect and stop the infusions, the first day is
really bad, because the drug is still building in the system.
Then 24 hours later you start losing your edema, two days later
you're pretty much looking okay, but you still keep feeling
pretty rotten for four or five days after that. Because of the
swelling, you end up peeling - my skin just sort of flaked off.
One of the most difficult side effects for me was something you
don't read or hear about: the depression brought on by the
drug. It's just horrifying. You go into the experience healthy,
then all of a sudden you start feeling miserable, you get this
chemical depression that really makes you sad. Even though you
know it's the drug that's making you depressed, I felt like I
was suddenly put into the "sick world," no longer among the
healthy. This depression would pass once the symptoms
disappeared and my system cleared itself of the drug.