Dr. Richard Bruno is Chairperson of the International Post-Polio Task Force and director of The Post-Polio Institute and International Centre for Post-Polio Education and Research at Englewood (NJ) Hospital and Medical Center. His new book, How to STOP Being Vampire Bait: Your Personal Stress Annihilation Program, will be published in 2004. E-mail him at ppsforum@newmobility.com.

Note: This column is for information purposes only and is not intended as a substitute for professional medical advice.

Q: I read in a newspaper health column that two drugs can treat post-polio weakness--Mestinon and another Parkinson's disease drug that wasn't named. I have weakness and pain. I've been on narcotics and Soma for a long time but I built up a tolerance and I'd like to switch to Nembutal for pain. Should I take Nembutal and one of these other drugs, too?

A: Mestinon? Narcotics? Soma? Nembutal? My, oh my. Where to begin?

First, there are no drugs that decrease post-polio weakness. An international, double-blind, placebo-controlled study found that Mestinon did not improve muscle strength in polio survivors. The same is true for insulin-like growth factor (similar to growth hormone), prednisone (a powerful steroid) and amantadine, a Parkinson's drug. In 1995 we did a double-blind, placebo-controlled study of bromocriptine, a more powerful Parkinson's drug than amantadine. But we used bromocriptine to treat fatigue, not muscle weakness. Patients on bromocriptine reported a noticeable reduction in fatigue and "brain fog"--difficulty with attention, concentration, word finding, mind wandering, memory and thinking clearly.

Is bromocriptine then "the" treatment for post-polio fatigue? Not at all. We don't recommend drugs, even bromocriptine, to treat fatigue. Fatigued polio survivors shouldn't pump themselves up with any drug, be it caffeine or, heaven forbid, "pep-pills" like amphetamines, Ritalin or Adderal. Actually, our study's most important finding was that nearly 90 percent of our patients were not eligible as subjects since their daily fatigue decreased markedly after they had applied all of the PPS symptom management techniques. Post-Polio Institute patients' muscle weakness and pain also significantly decrease when they "conserved to preserve." That's why we also don't use narcotics or muscle relaxants, like Soma, to treat pain. Pain is your body's way of telling you to slow down.

Nembutal? It's a sleeping pill, not a pain pill. Polio survivors who have insomnia shouldn't be taking nembutal, let alone those who have pain. If you have trouble sleeping or daytime fatigue, you should get a sleep study to find out why you can't sleep, not use a sleeping pill to drug yourself into oblivion. Polio survivors are very sensitive to any drugs that are sedating, sleeping pills as well as antihistamines and some medications for high blood pressure, like beta blockers. And of course drugs intended to sedate you knock polio survivors for a loop. "Mild" anesthetics used for "twilight sleep" during a colonoscopy, endoscopy or before major surgery--fentanyl, Versed, propofol--and certainly the gas anesthetics that keep you under during major surgery, can make polio survivors sleep for hours longer than they should and make you groggy and unsteady for days. (See "Preventing Complications" articles in the Post-Polio Library at http://postpolioinfo.com/postpolio.)

Unfortunately, you can read much on the Internet concerning pills that are said to either hurt or help polio survivors. The buzz in the post-polio community is that muscles break down in polio survivors taking cholesterol-lowering "statin" drugs like Lipitor. There have been no specific studies of the effects of statins in polio survivors. Only about one-half of 1 percent of those who take a statin develop rhabdomyolysis, a condition where muscles do indeed break down. These cases are diagnosed by measuring an increase in CPK (or CK), an enzyme released when muscle breaks down. However, the one study looking at CPK in polio survivors found that the average level is elevated (225--normal is less than 150) in those with muscle weakness who are not taking statins. So polio survivors should have CPK measured before taking a statin. If you are on a statin and feel any muscle pain or weakness, especially in your calf muscles, stop the drug immediately, call your doctor and have a your CPK measured. If you don't want to take a statin at all, ask your doctor if you can try changing your diet, taking slow-acting niacin or a bile acid sequestrant drug to lower cholesterol.

Finally, there are no studies showing that herbal remedies--carnitine, cysteine, or coenzyme Q10--reduce PPS symptoms. Polio survivors shouldn't think they can run themselves ragged, pop a pill and make PPS disappear. Self-care--not medication--is the prescription for post-polio fatigue, weakness and pain.