I recently started my first ever once-a-day HIV drug regimen. This isn’t an endorsement. I just wanted to discuss this in the context of the long road that brought me here. Being diagnosed at age 11, in 1987, was tough. Even a heaping bowl of Fruity Pebbles couldn’t sugarcoat it.
After AZT was approved, my doctor was hoping that I’d try it. My mom asked me if I wanted to. I asked her if it would cure me. She truthfully said that no, it wouldn’t, so I said no. I didn’t want to take anything that only guaranteed more needles going into my arm, and I hated the lab work.
My T cells fluctuated a bit but always stayed right around that danger zone. If I got a cold, it would last longer than if my big brother got it. Strep throat visited at least once a year for a few years. After I graduated high school, I noticed a dip in my energy.
A couple of years after my graduation is when real HIV treatment options were available. It was 1996, the same year I decided to go public with my status. Once again, my doctor implored me to consider taking HIV drugs. But I was in a different headspace, way more worried about updating my website or turning in my latest “Positoid” column for POZ.
Even after a really nasty bronchial infection that lingered for close to two months, I didn’t consider HIV medications. Perhaps my resistance stemmed from the fact that treatment for hemophilia had given me HIV—as well as hepatitis B and C.
Things took a turn for the worse in 1999. I got the flu or something akin to it and lost about 30 pounds over the course of three months. My borderline T cells were plummeting.
My attitude on the lab work had shifted. For a couple of years, I was running a contest for my friends in the POZ office: The Lab Test Contest.
Whoever guessed closest to my actual T-cell count would get a signed (by me!) photo of me with a random celebrity I had met through the years.
As my health was failing and my longtime doctor was retiring, I finally agreed to take something: Marinol. Synthetic THC. I’d never smoked pot. My appetite increased dramatically. And yes, I got totally high too.
However, my T cells continued to crash. By the time I met with my new doctor, he didn’t bother asking if I wanted to take HIV drugs—he asked when we were starting.
I was pretty scared when I started my first combo. One med was six pills a day, and that was just one of three drugs. After just weeks on treatment, my viral load decreased quickly. The increase in T cells was more gradual.
It turned out it was the right time for me to start—even though it was a little late—because I was finally ready for the commitment of taking the pills every day.
Side effects from my first combo were pretty rough, with nausea and diarrhea. After a few years on the second combination, I noticed the mental fog.
I then started a week-on/week-off strategy. Seven days on HIV meds, seven days off. The next switch was from week-on/week-off to fewer drugs but daily. My viral load remained undetectable for years.
One consistent side effect of my HIV meds has been elevated cholesterol levels. The one-a-day pill for HIV that I just started supposedly will not have a negative impact on my cholesterol. I sure hope that’s the case.
All in all, though, I feel so fortunate. If this doesn’t work to reduce my cholesterol, there are other options out there.