Photo by Ralph Blakely, III
Being HIV-positive is not an easy life. What happens if you add RA to the mix? How does your HIV status impact your RA treatment? I recently interviewed my friend Mary Turner from Charleston, S.C., who's lived with HIV since the late 1980s.
Mary is one of the longer survivors of HIV. "I was infected in 1985 when I was living in New York City." This was in an age where HIV was only found in gay men and drug users. At that time women’s biggest worry about being sexually active was unwanted pregnancy. For most, birth-control pills to care of that concern — condoms were unnecessary. In the late 1980s, however, that changed when women began to get HIV. Mary got a diagnosis of being HIV-positive in 1988 and says that doctors "believed I was one of the first five or ten upscale, professional women in New York infected with HIV who was not an injecting drug user."
Life with HIV
"I have had AIDS lots of times," Mary says. Initially, full-blown AIDS was determined to occur when a person had a T-cell count of less than 200 and one or more AIDS-defined illnesses. Over the years, Mary has been close to death many times. Throughout, she and her family have coped with a trademark New York sense of humor — she tells the story of the year her father joked that "it was my 10th annual last Christmas."
As new, more effective medications were developed, Mary achieved a better control of her HIV status. At present, her T cells are 900 (normal), and her viral load is negligible. Despite this, she cautions against what she feels is the current apathy towards the disease, seeing it as "just another chronic illness. It’s not fixed, it’s a long-term thing. The drugs are keeping me alive, but they take their toll. It is a shitty life in a lot of ways."
RA and HIV
Mary began showing symptoms of RA in 2005 and was diagnosed in 2007. She started methotrexate, but when it failed to work, her then-rheumatologist suggested Enbrel. Given her HIV, Mary was hesitant to start an immunosuppressant, but "the rheumatologist said she had several patients with HIV who were doing well on it."
Shortly after starting Enbrel, Mary began to experience "weird, cognitive symptoms. I was forgetful, I couldn't see. The day I woke up in a ditch after crashing my car, I stopped Enbrel." After an intense medical investigation, it was determined that she had a lot of white matter in her brain. "I had Epstein-Barr virus in my spinal fluid and brain. Everyone has this virus in our bodies, but it normally doesn't cross the blood brain barrier." It appears that the interaction between HIV and Enbrel changed this for Mary. "I had seizures, psychosis, I was hallucinating and my friends created a schedule of being with me around the clock, because I couldn't be left alone." She was admitted to hospital there and put on antipsychotic medication. "I had been in the hospital for one month [when I] became conscious again. I slowly regained my sense of self and realized that I’d been crazy.” She is still taking the antipsychotic medication and expects to do so for the rest of her life. "It was the worst illness. I've suffered of all my illnesses. Being mentally ill wrecks who you are, your identity."