In the spring of 1999, Rob Normyle was going through a difficult breakup when shingles struck. “A patchy, painful rash broke out on the side of my face,” says Normyle, who was diagnosed with HIV in 1985, “and my doc immediately gave me acyclovir.” A few weeks later, the rash was nearly gone when Normyle flew down to Ft. Lauderdale to visit his grandmother. “The minute I stepped out of the airport and the sunlight hit my eye,” he says, “a dark film came over it and I felt like a needle was piercing it.” Local docs were at a loss, but a Miami eye clinic diagnosed it as shingles of the cornea. Normyle was put back on acyclovir plus pain-killing eye drops and OxyContin. “I lost sight in the eye for a week,” the 45-year-old says, “and I had to wear a pirate patch for almost a month.” For two years, scarring (now cleared up) was visible on Normyle’s left cornea.
Remember those itchy chicken pox pustules from your childhood? After you’ve had the illness, the chicken pox virus—varicella zoster—goes dormant in nerve roots and can reappear painfully later in life as shingles (herpes zoster). Shingles can hit people whose HIV is under control, but it’s more common and often worse in those with low CD4 counts.
“My shingles began with a weird, awful headache when I was stressed and had 80 CD4 cells,” recalls D’vorah Darvie, an HIV-positive artist in Santa Cruz, California. “Then blisters appeared above my left eye, my eye was all swollen and I knew I was in deep doo-doo.” Darvie needed three weeks of intravenous Valtrex (valacyclovir, similar to acyclovir).
An attack starts with a burning, tingling or numb sensation on your skin, frequently accompanied by fever, headaches and nausea. Clothes, bedding or anything else touching the skin may cause pain. Within days, a rash of fluid-filled blisters blossoms in a band called a dermatome across one side of the body. Fortunate folks experience only mild discomfort; for others, the pain can be excruciating. Some research shows that prompt use of antiviral medications such as acyclovir can help minimize the duration and severity of shingles. Regardless, you should immediately see a doctor.
As in Darvie’s and Normyle’s cases, shingles is often triggered by heightened stress, exhaustion, even severe sunburn, and positive people are frequent targets.
People can get shingles more than once, says Kim Erlich, MD, an infectious disease specialist at the University of California in San Francisco. It may be hard to tell, though. “Sometimes,” explains Jeffery Roth, MD, a Manhattan dermatologist, “an outbreak of herpes simplex [HSV-1 or -2] can be so severe that it’s difficult to differentiate it from shingles and a test may be [needed]. But the treatment is similar, with higher [acyclovir] doses for shingles.”
One bout is more than enough, so Roth may also prescribe a low, prophylactic daily acyclovir dose, especially for people with a history of recurrences.
Normyle says stress often produces a spot of herpes on his lip; at the first twinge, he starts taking acyclovir. “I would take it prophylactically,” he says, “but I try to keep my pill intake to a minimum.”
Most often, shingles lesions heal in three to five weeks, leaving little scarring. But Erlich says that about 5 percent of shingles sufferers experience another phase of the condition: mild to severe post-herpetic neuralgia (PHN). Caused by the virus’s damage to the nerves, PHN can produce pain ranging from tenderness of the skin to a burning or throbbing that lasts for months or years.
Since PHN can hurt as much as shingles, Erlich says, “in addition to an antiviral, for severe pain I might prescribe corticosteroids such as prednisone for several weeks, slowly tapering off. But steroids can cause further immune suppression in people with HIV, so it needs to be decided on a case-by-case basis.” When over-the-counter painkillers fail, doctors might prescribe an anticonvulsant such as neurontin, or an antidepressant that reduces the pain, such as Elavil.
In 2006, the FDA approved Zostavax, a shingles vaccine for people over 60 who have had chickenpox. It reduced cases of shingles by half and dramatically lowered the severity and complications in those who did get it. Though Zostavax has not yet been fully evaluated in people with HIV and is not generally recommended (it contains live varicella), Erlich says, “It’s my personal feeling that it might be fine for a person with a relatively high CD4 count—say, over 300 or 400—who is relatively healthy. But it’s not approved for people younger than 60, so insurance might not cover it.”
Normyle has remained shingles-free since his first outbreak. Both Darvie and Normyle are careful to keep HIV under control. To keep stress at bay, Darvie says, “I meditate religiously, and when I’m stressed or tired, I go out to my hammock among the flowers. That’s hugely calming for my psyche.”