 Richard L. Bruno
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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: My doctor gave me Provigil to treat fatigue. The first few days I had a boost of energy and activity, but it faded quickly and I became agitated. Then I got really depressed. When the doctor stopped the Provigil, I became much more depressed, and I actually felt suicidal. I'm OK now off the drug. Is this what polio survivors feel on Provigil?
Some polio survivors have problems with Provigil. Big ones. There have been three Post-Polio Institute patients whose local doctors put them on Provigil and who had the same experience. They felt more energy at first, then became "hyper," agitated and irritable, and ultimately depressed. After stopping Provigil, they became more depressed and actually felt suicidal. Fortunately, those feelings stopped after a few days.
Provigil (modafinil) is a brain-activating drug approved for the treatment of narcolepsy but whose mechanism of action is unknown. There has been no published trial of Provigil for the treatment of post-polio fatigue. Neither its effects nor side effects have been documented in polio survivors. But Provigil has been tested in other groups of patients, including those with chronic fatigue syndrome.
Responding to my Internet request for experiences with Provigil, several people with CFS reported that the drug did decrease fatigue and increase alertness. However, one said Provigil didn't decrease her fatigue, it just made her feel "fatigued and awake at the same time." Another said that Provigil kept her "agitated and awake, like I'd had lots of caffeine. It was a horrible feeling." Others reported that fatigue decreased, then increased again after a month on the drug. One person reported exactly what our PPS patients described: becoming "anxious and agitated," then feeling severely depressed and suicidal.
It makes sense that a drug intended to increase energy could be "too much of a good thing," making you feel too activated, agitated and "wired." Provigil's manufacturer states that 7 percent of test subjects reported "nervousness" compared to 3 percent taking a placebo. Five percent taking Provigil reported anxiety as compared to 1 percent of those on the placebo. But why would Provigil make some people feel depressed and even suicidal?
One reason may be that Provigil blocks enzymes that break down selective serotonin reuptake inhibitor antidepressants, like Prozac and Zoloft. Taking Provigil with an SSRI would increase the amount of antidepressant in your blood. Here again, more isn't necessarily better. A recent study has linked elevated blood levels of SSRIs to suicidal thoughts and attempts.
Even at normal blood levels, Prozac was associated with suicidal thoughts in 3.5 percent of people taking it for depression. Suicidal thoughts and gestures were reported in almost 3 percent of those taking SSRIs for obsessive-compulsive and panic disorder, people who weren't necessarily depressed. So it makes sense that suicidal thoughts could be more likely in those taking Provigil who are also taking a SSRI to treat depression. In fact, all of the Post-Polio Institute patients reporting depression and suicidal thoughts during and after taking Provigil were on an antidepressant, so this interaction is probably key.
The bottom line is that we don't recommend any medication to treat post-polio fatigue. In 1995 we did publish a placebo-controlled study of bromocriptine, an anti-Parkinson's disease drug, to treat post-polio fatigue. Subjects did report a reduction in fatigue, difficulty with attention, concentration, word finding, mind wandering, memory and thinking clearly. But the study's most important finding was that 92 percent of our patients were not eligible to be subjects because their daily fatigue decreased markedly after applying "conserve to preserve" symptom management techniques. Neither bromocriptine nor Provigil are "magic pills" for treating post-polio fatigue. The "drug" of choice for fatigue--for all PPS symptoms--is still the "Golden Rule": If anything causes fatigue, weakness or pain, DON'T DO IT! (Or do much less of it.)
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