Fumbling Towards Health
In the fall of 1987, at the age of 25, I went to be tested for HIV. In the elasticized lengthening of time between then and Halloween when I would get my results, I had convinced myself that my test would come back negative and that I would get on with my life. I was unprepared to hear the words that I was HIV-positive and reacted with a sort of disassociative dance, as if I were watching all this from outside, shocked but disconnected. After a couple of cathartic phone calls to people close to me, I retreated into a certain level of denial and went three and a half years before seeking medical attention for HIV.
One direct message I finally heard was that if you had less than 200 CD4 cells, you should go on prophylaxis against PCP so as not to die a needless death. In the Spring of 1991, I finally saw a doctor who ran a series of tests. I found out that I was hepatitis B surface antibody positive, core antibody negative, meaning that I was exposed to HBV at some time in the past, but had controlled it. I was also positive for something called non-A, non-B hepatitis, which would later be recharacterized as hepatitis C. Whatever. A disease without a name. I chose to ignore it. My CD4 cells came back in the mid-300s.
A year later, I began a series of monotherapies, expanding in 1994 to dual therapy, and then in early 1996 to triple therapy. Each of these regimens usually followed the same pattern -- a rise and then subsequent fall in CD4 cells. When viral load became more widely available, it was clear I wasn't reaching anything approaching maximum viral suppression. In the summer of 1996, when the virtual cure was announced at the International AIDS Conference in Vancouver, I was virologically failing my second protease inhibitor-containing regimen.
I took two six-month long structured treatment interruptions hoping that in the absence of selective pressure provided by antiretrovirals, my HIV might revert to wild type and subsequently respond to medicine. After the second STI, in January of 2001, I started a new regimen. My viral load plummeted and after a few months was just over 200 copies. But I felt really wiped out. The reason for my fatigue soon became apparent. My liver enzymes had started climbing and eventually skyrocketed to twenty-one times the upper limit of normal! I was scared. It seemed like I had cheated fate for a long time now and it was finally catching up with me. My HIV doctor was also thrown, having never seen numbers like that.
We discontinued my HIV meds, and I went to see a liver specialist who ordered an ultrasound of my liver to rule out cancer. It came back negative. But it felt as if I was bouncing between several doctors, each with their own spin on what might be going on. Was it the hepatitis C (viral load greater than 3 million), plain antiretroviral-induced toxicity, or some combination of both? The liver enzymes didn't immediately come down after stopping my meds; in fact, they kept climbing for a while, increasing my panic.
The good news was that my HCV was the more easily treated genotype 3. I decided to try to treat the HCV first by joining a trial for Pegasys, a pegylated interferon, and later come back to treat the HIV. My liver biopsy showed moderate inflammation and moderate fibrosis. After four weeks on the interferon, my HCV was quantitatively undetectable and at twelve weeks qualitatively so. This was encouraging, but I was becoming progressively more fatigued. During this time, I also developed really strong pain in my left cheek that I thought was a toothache. So I had another frustrating four week round of doctors scratching their collective heads before they figured out that it was shingles without skin eruptions. Meanwhile, I was exhausted -- sleeping a lot and not having energy for much of anything. My CD4 cells kept falling due to white blood count suppression, and I restarted HIV medicine.
Within a little more than a month, my HIV was undetectable for the first time ever. But my CD4 cells kept falling to an all time low in January 2002 of 129. Even more frustrating, though, my fatigue was really taking over. I was sleeping most of the time, and had become unpredictably bitchy -- easily upset and angry out of all proportion to things that ticked me off. My poor boss! I decided that even though the study wanted me to take interferon for a year, my quality of life had fallen so low, I would discontinue at 24 weeks, since participation in any clinical trial is always voluntary. I told the study coordinator that I was willing to be followed, but not to stay on HCV treatment. Within 12 weeks, my HCV returned to detectable levels, but my liver enzymes have only come back to twice the upper limit of normal and have remained steady for several months. My HIV remains undetectable, and my CD4 cells have roughly returned to baseline, in the 500s.
Most importantly, within two weeks of stopping the interferon, I felt much more like myself. I made the right decision for me, even though it didn't lead to a sustained virologic response. Would I do alfa interferon again if I needed to? I'll drive off that bridge when I come to it.
Jeff Gustavson is an HIV and HCV positive activist who lives and swims in San Francisco.
This article was provided by AIDS Community Research Initiative of America. It is a part of the publication ACRIA Update. Visit ACRIA's website to find out more about their activities, publications and services.