Managing Side Effects
"A friend once called this [the HIV epidemic] the world's biggest experiment with long-term use of Imodium," says Spencer Cox, of New York's Treatment Action Group, referring to the popularity of the anti-diarrhea medicine among those taking anti-HIV drugs. He's not really joking: The side effects that drug companies list in small print can be a huge part of daily life on anti-HIV meds. For some, drugs like Imodium are like beer chasers: Right after popping a few HIV pills, they run to the bathroom like clockwork. Forget a spontaneous night of romance-your toilet is calling.

While many side effects, including diarrhea, can be resolved with medication, dietary changes, or both, finding a solution can take time-lots of time. "It took me two years to solve my problems with diarrhea," says David, an HIV-positive New Yorker who now takes three different meds and eats a carefully planned diet. "I knew every public bathroom in the city." If you're just starting HIV meds, remember that side effects like rash, vomiting, and diarrhea are generally most severe during the first two weeks of treatment and can be controlled. Don't ignore them or be unnaturally stoic: Discuss what you're going through with your doctor and consider seeing an HIV nutritionist. "People need to know that they shouldn't be heroes with this," says New York AIDS doctor Howard Grossman.

Here are some doctor-recommended and road-tested tips for dealing with the most common downsides of HIV therapy.

Diarrhea: Treat with Lomotil, paregoric (tincture of opium), or Imodium. Experimental therapies include pancreatic enzymes (Ultrase) and Provir. Some people follow the "Bratt" diet of bananas, rice, apple sauce, tea and toast. Avoid large amounts of high-fat foods and raw vegetables; instead, eat high-protein foods like beans and fish. Advocates recommend following what's called the Rule of Five: If you have more than five loose stools for more than five days, or lose more than five pounds, seek medical attention immediately. Daily fiber (rice, cereal) and soluble fiber supplements like Metamucil can also help. You can find these at a health food store.

Skin: Dry skin, rare scalp and body hair loss, and ingrown toenails have been reported with HAART drugs, so discuss any persistent problem with your doctor. Treat dry skin with aloe vera gel or juices from fresh aloe leaves, moisturizers (Complex 15, an over-the-counter lotion works well) or, in some cases, anti-itch medication like cortisone. Shower no more than once a day and only use soap on visible dirt. Use anti-fungal medicines for fungal problems. Drug-related rash can be a first sign of allergy, including Stevens-Johnson syndrome, a possibly fatal reaction. See your doctor immediately.

Nausea: Small frequent meals (if your dosing schedule allows) and mild or cold foods can help. Premeal relaxation, drinking ginger ale, or cutting up a lemon and smelling it may ease mild symptoms of nausea. Nutritional supplements L-acidophilus and L-glutamine are kind to your gut and good for digestion. Treat drug-related nausea with Compazine, Zofran (a pricey drug used in chemotherapy patients), or Marinol (synthetic marijuana). Marijuana is illegal in most states but can ease nausea, and advocates are pushing for its approval on a compassionate-use basis for those with HIV. Remember that most remedies have to be taken before you become nauseous. Try taking Norvir 10 to 15 minutes after you eat instead of with food.

Brain and Mental Problems: Many HIV drugs cause headaches that can be treated with over-the-counter medications, but check with your doctor about potential drug interactions. For some, once-a-day Sustiva may cause more severe central-nervous-system problems, including dizziness and feeling "out of it" (see "Anti-HIV Drugs"). The good news is that these symptoms usually go away after two to three weeks. The bad news is that the range of psychological side effects can be frightening, disruptive, or just plain weird, including bad dreams, depression, and rage. Anti-anxiety drugs, anti-depressants, and sleeping pills can all make early side effects tolerable, but again, check with your doctor about potential drug interactions. Sleeping pills in the benzodiazepine family (Valium, Atavan, Restoril) may be particularly helpful at minimizing bad dreams, say experts. Tricyclic anti-depressants (nortriptyline, amytriptyline, etc.) can cause grogginess on their own, so they may not be the best choice for treating these side effects. If insomnia is a problem, try taking Sustiva at dinnertime.

Anemia: Anemia is an extremely common side effect, particularly with those taking "nukes" such as AZT, 3TC, d4T, and hydroxyurea. Anemia can also be caused by opportunistic infections, like mycobacterium avium complex (MAC) and tuberculosis, and deficiencies of B-12, folic acid, or iron. It's important to identify the cause before you start treatment. Procrit or Epogen (both forms of epoetin-alpha) are the most widely used drugs. Women may be at higher risk for anemia due to drug-induced heavy periods (hypermenorrhea). Iron supplements should be used with caution since excess iron can harm the liver. Anecdotal studies suggest some Chinese herbs (dong quai, bai shao, chuan xiong) are blood builders that may help counter drug-associated anemia.

Fatigue: If you're tired all the time, chances are it's not all in your head. Check for nutritional or hormonal imbalances, thyroid dysfunction, depression, and anemia. Ironically, exercise can help fight tiredness, even if it's the last thing you feel like doing.

-EB