Edwin Perez could be the poster boy for HIV as a “manageable” disease. He looks terrific, and his virus is under control. But the 46-year-old has a disorder that hits up to two-thirds of those with HIV. Perez started meds a year after his 1993 diagnosis and says he soon felt “like someone was sticking needles in my toes.” Having tried multiple remedies without results, he adds, “I spend most of my time in the apartment.”
Perez has peripheral neuropathy (PN)—nerve damage that causes pain, heat, numbness and prickling in the hands or feet, ranging from annoying to debilitating. The medical establishment’s response has been annoyingly slow. Researcher Mary Catherine George, who works with PN expert David Simpson, MD, at New York City’s Mt. Sinai Medical Center, blames the slow progress partly on “the challenge of finding effective treatments that don’t add to the pill burden” for positive people. Simpson adds that the medical understanding of all pain, HIV-related or otherwise, is hardly advanced. Yet he adds, “This is an exciting time for PN research—many treatments are coming down the pike.”
Before positive people can benefit, they should understand PN’s causes. You can get PN from HIV meds—and even if you’re medless. Two HIV drugs, d4t (Zerit) and ddI (Videx), are the most common culprits, even after you stop taking them. PN in those never on meds remains mysterious, though Simpson says new research debunks old notions blaming low CD4 counts. Lots of folks who aren’t positive, especially those with diabetes, also get PN. (Perez has diabetes too.)
You may be able to avoid PN by avoiding Zerit and Videx; if you take them, talk to your doctor about switching. Cut out or down on booze, which (truly!) works your nerves; proper diet and exercise can help prevent or control diabetes.
If you have PN symptoms, Simpson says, “Bring it to your doctor’s attention—many aren’t sufficiently aware.” He also warns that numbness can mask cuts and sores and advises seeing a podiatrist for special shoes. Longtime positive New Yorker Thomas Devon, 57, reports, “I limped along with PN for about 15 years, trying everything, until I found chef’s shoes. Finally, I can walk more than a block without groaning.”
Medical remedies include topical anesthetics like Lidoderm, the epilepsy drugs Neurontin or Lyrica and antidepressants Elavil or Pamelor (these four drugs work on the brain, your nerve center). Prescription narcotic or non-narcotic pain relievers may also help. Simpson advises getting enough vitamins E and B-12, a lack of which can promote PN; but beware too much vitamin B-6, which can worsen it.
As for new strategies, there’s NGX-4010, a patch packed with capsaicin (derived from chili peppers) and applied by a doctor to the site of PN pain. In studies, one application worked for up to three months in folks with HIV—the final study leg is enrolling now. The Mt. Sinai researchers are also examining the effects of hypnotherapy and whether epoetin (Procrit) can change the damaged nerve fibers. Trials elsewhere involve acupuncture and the nutritional supplements alpha-lipoic acid and acetyl-L-carnitine. POZ even found an early but promising test of gene therapy to restore nerves damaged by all forms of neuropathy.
Will Perez enlist? “The trials sound good,” he says. At least they may get him out of the house.
For more info on PN studies, call Simpson’s office at 212.241.0784 or search “HIV” and “neuropathy” at www.clinicaltrials.gov.