Treatment Review No. 10; March 1994
I've been feeling fine for a long time and haven't had anything
except some minor headaches and fatigue. But my blood counts
are very low. My blood counts have been low since I found out I
was HIV+ in 1988.
IL-3 is supposed to raise white blood cells and platelets. I
took it for three months by injection. I gave the shots to
myself once a day. I was taught at St. Vincent's how to give
myself injections. It was hard at the beginning. I always hated
needles. Some days it would take me an hour with the needle
pointing at my leg. Now I don't even think twice. I give myself
the injections in my thigh. I had no idea if the IL-3 was good
for me. I was getting flu symptoms - bad body aches, heavy
headaches, bad night sweats every night. I was told I'd have
that kind of reaction for a week or two, but it went on for
three months and didn't go away. My blood counts improved very
little. I was told it might go slowly. I wanted to see a more
immediate reaction. My quality of life was horrible, even
though the people running the trial said the treatment was
promising. I quit after three months.
Now I am taking G-CSF (Neupogen). This treatment is not part of
a study. Medicaid pays for the Neupogen, which is an approved
treatment. I've been taking it for 8 months. I'm supposed to
take it every day. I've started taking it every other day
because I've had some side effects for the past three weeks. I
take a low dose - a quarter of 1 cc. The side effects are night
sweats and chills at night. I'm sure it's related to the drug,
because it only happens when I take the Neupogen. Some nights I
have to change my shirt.
I take 3 Tylenols or a Motrin half an hour before giving myself
an injection. I don't like to take all these drugs or to upset
my stomach. Taking the Tylenols or the Motrin helps with the
side effects. I'm still not happy about it, because obviously
something's wrong. Why am I having side effects now that I
wasn't having before?
My T cell count is pretty low, but they've been low (right now
it's 4) for the past five years. My white blood cell count is
very low. The Neupogen is helping. There was a dramatic change
when I first started. Then I was feeling good, so I started
taking less since I don't like taking all these medications. I
have good energy.
It's still scary, because I might get an infection. But my
blood counts have improved with the Neupogen, so I continue
taking it every day.
I'm also taking oxandrolone through a study with Don Kotler,
MD. I've been taking it for the past 9 months. My appetite is
stable. The oxandrolone is to help me gain weight. I had ulcers
a year ago and had lost a lot of weight at that time. I
couldn't eat. I went to see three doctors and they thought I
had CMV which was the scariest thing. I didn't have insurance
and all my medical care was through clinical trials. I had to
make decisions about getting disability and Medicaid. At first
I was getting placebo, but after four months I got the
oxandrolone. It seems to be helping. When I started my weight
was 130. Now it's 140, which is a good weight for my height and
When I first saw Dr. Kotler for the ulcers, he gave me
prednisone, an anti- inflammatory. It felt like hell and I
wanted to jump out a window. I was also moving. I thought I was
going to die. I couldn't sleep for three weeks. No sleeping
pill would help. After he started reducing the dose, which I
knew I only had to take for a month, I improved. The ulcers
healed. I no longer take the prednisone.
Nutrition is the basis for my good health. I don't eat sugar,
caffeine, smoke or take drugs. I try and eat clean, organic
foods as much as possible. I eat red meat and chicken, and try
to get organic meats. I exercise regularly and do yoga.