For HIVers, the Vioxx saga is a tiny wince in a lifelong
battle with pain. Here, what really works.
HIVers can be forgiven a collective snore at the media’s newest medical
obsession: the excruciatingly vague science of pain relief. Suddenly,
pain afflicts the front cover of Time, The New York Times’
science section and scores of TV news segments. It all began when Vioxx
was bumped off the market last December. Along with Celebrex and
Bextra—other Cox-2 inhibitors in the class of NSAIDs (non-steroidal
anti-inflammatory drugs)—the blockbuster painkiller significantly
raised heart-attack and stroke risk. Typically missing from the press
frenzy was any mention of what Cal Cohen, MD, research director of
Boston’s Community Research Initiative of New England, calls the
“additional burdens in diagnosing and treating pain” that HIV—and its
treatments—place on patients and providers.
took a look at how HIV pain experts shoulder those burdens, offering a
short list of HIVers’ most common hurts—and tips on top treatments.
Plus, HIVers contribute remedies that aren’t on Doc’s formulary. “Many
drugs are useful in treating HIV-associated pains even if they’re not
approved for that purpose,” says Howard Rosner, MD, med head at LA’s
Cedars Sinai’s Pain Center. (You may have to go way off-label—and mix
and match remedies—to keep your pain from going off the chart.) As for
the Cox-2 newsmakers, most HIV docs say they’ll prescribe ’em for
headaches and joint, muscle and back pain—but mostly for short-term use.
BIG PAIN #1: Peripheral Neuropathy (PN)
IT HURTS: PN’s nerve damage numbs or inflicts a burning sensation on
the hands and feet of about 30 percent of HIVers. Linked to “d”
nukes—d4T (Zerit), ddI (Videx) and ddC (Hivid)—it can also result from
HIV itself. WHAT HELPS: David Simpson, MD, director of clinical neurophysiology
at Mt. Sinai in New York City, both studies and treats HIV-related PN.
He usually starts HIVers on the least invasive treatment, such as
Lidoderm, a lidocaine patch for post-herpetic neuralgia (a
painful shingles after-effect; see “What Else Hurts,” below). • Second
choice: antidepressants like the new Cymbalta or anticonvulsants like
the new Lyrica (or the older Neurontin). • If you’re still hurting, Doc
might try narcotics like percodan, vicodin or Tylenol with codeine.
Studies show that drugs like the tricyclic antidepressant Elavil may
soothe diabetic PN, which stems from impaired bloodflow and high blood
sugar, but might not ease HIV PN, which has a different cause. • Some
HIVers swear by acupuncture; others try exercise, yoga, marijuana,
hypnosis and anodyne infrared-light therapy. Ray, a 44-year-old New
Yorker, says he got PN from Zerit. His doctor recommended B-12
injections. “It took over a year, but that was the only thing that
helped,” he says. WHAT’S COMING: Simpson is planning studies of
Cymbalta and Lyrica (both FDA-OK’d for diabetic PN) on HIV PN. He warns
that the body uses the same route to process Cymbalta and HIV protease
inhibitors, so doses might need adjustment when the two are paired. •
Trials of one pain-relief hope, Prosaptide, have been halted—at least
for now—but high-dose capsaicin patches and carnitine are still in the
running. (To find a carnitine study: www.clinicaltrials.gov,
BIG PAIN #2: Joint and Muscle Pain
IT HURTS: Along with all the aches and pains all flesh is heir to,
HIVers get to experience their own HIV-related ones, caused by certain
infections, HIV arthritis, the meds or the virus itself. Two examples:
Reactive arthritis (an after-effect of infection or injury) hits some
50 percent of people with AIDS; osteonecrosis (bone death that causes
joint pain) affects about 4 percent. • Ariel Teitel, MD, a
rheumatologist at St. Vincent’s Hospital in New York City, says
osteonecrosis may link to long-term PI use. It’s also caused by
steroids that treat PCP pneumonia. WHAT HELPS: For joint and muscle
pain, Teitel uses creams or patches like lidocaine. NSAIDs, Tylenol,
acupuncture, massage and exercise are options. • Tom, a New York city
graphic artist positive since the early ’80s, suffers from HIV’s
inflammatory joint pain. “Taken regularly, fish-oil supplements and
anti-inflammatory herbs like turmeric reduce my pain,” he says.
BIG PAIN #3: Headaches
IT HURTS: Many HIV doctors say almost all HIV drugs can cause plain old
headaches. Pesty infections like herpes can contribute; serious
ones like CMV encephalitis and cryptococcal meningitis can create
horrid headaches. But most HIVer headaches are garden variety, not
related to the virus. WHAT
HELPS: No-brainers: aspirin, acetaminophen (Tylenol) or
over-the-counter NSAIDs. But be sure to alert your doc to any new or
severe headaches—especially with a fever.
The biggest headache
to treating pain? It’s utterly subjective, varying from HIVer to
HIver—as do remedies. “All treatments help a subset of people—one size
rarely fits all,” says Keith Henry, MD, a top Minneapolis HIV doc.
Remember that study showing that the supplement glucosamine, touted for
joint pain, worked no better than a placebo? Don’t tell your friends
whose knees it eased. • LA’s Rosner urges relentlessly trying
treatments—even in combination—until you find a winner. That’s what
Gary, 55, positive since 1991, did. “I’d tried every med in the book
for my PN. When I moved to New York City from Cleveland, I turned to
needles—a year of weekly acupuncture sessions finally got my feet to
where I could stand, walk and live my life.”
WHAT ELSE HURTS Three more common HIV-related pain complaints:
NAME: Post-herpetic neuralgia (PHN) from shingles
WHY IT HURTS:
PHN is a hangover of shingles—the blistering caused by herpes zoster
virus—in which damaged nerve fibers continue to produce pain and
burning. WHAT HELPS:The topical Lidoderm patch is approved for PHN. •
Some HIVers reach for low-dose capsaicin cream, the anticonvulsant
Neurontin or tricyclic antidepressants like Elavil and Pamelor. • Icing
the area continually as soon as nerves start tingling can shorten PHN
WHY IT HURTS: Muscle inflammation leading to cramps, stiffness, spasms and weakness. It can be a toxic side effect of HIV meds like AZT.
WHAT HELPS: Switching the offending med may be necessary. • The amino acid carnitine may lessen the pain—and even repair muscle damage.
NAME: Psoriatic arthritis
WHY IT HURTS:Pain
in the joints from inflammation caused by psoriasis, a skin rash common
in people with faulty immune systems: Your immune system attacks your
own skin; inflammation follows.
WHAT HELPS: Immunosuppressive
drugs like cyclosporine, methotrexate, Vitamin A derivative, TNF
inhibitors or Amevive are used to block the out-of-whack immune
activity. • UV light is used, too.