Ask the Doc: Q & A with Edward Kasarskis, MD, PhD
Edward Kasarskis, MD, PhD is Director of the University of Kentucky ALS Multidisciplinary Clinic at Cardinal Hill Rehabilitation Hospital in Lexington, Kentucky, professor in the Department of Neurology at the University of Kentucky, and Chief of Neurology at the VA Medical Center in Lexington KY.
Q: I hear about so many claims on the internet for megavitamins, herbal remedies and supplements to slow ALS. They all look so promising. Do they help?
Dr. Kasarskis: It’s not ridiculous to think that plants and natural products might have benefit in ALS. After all, many drugs used in medicine were originally derived from plants; For example, colchicine for gout comes from the autumn crocus (Colchicum autumnale, growing in my back yard), and digoxin comes from the foxglove plant (Digitalis lanata). But when we’re talking about using herbal remedies and supplements to slow the progression of ALS, we have to be careful. Virtually none of these products has been tested in persons with ALS.
Here is what we do know:
- Creatine has been tested in North American and Europe and no benefit was found in slowing the progression of ALS, although one study suggested it might increase muscle strength temporarily.
- Vitamin E, in very high doses, was studied in Europe, and showed a modest, but insignificant, benefit in slowing the progression of ALS. There may be, however, negative effects from such doses. An analysis of a wide range of Vitamin E treatment trials for a variety of conditions showed an increase in the risk of bleeding and stroke, raising safety questions.
- Co-enzyme Q10, at 2700 mg a day, was studied to see if it would slow ALS by 20% (using the ALS Functioning Rating Scale, revised, or ALSFRSr). That high degree of impact was not found, but a smaller benefit may have gone undetected since the study was designed only to determine if there was a very large benefit. Importantly, no adverse consequences were discovered. Although there may be some value in taking Co-enzyme Q10, it is expensive.
I know all of this is frustrating for ALS patients, their families, and their well-intentioned friends who want to be pro-active in managing the disease. This is very understandable. I just did a Google search on “ALS” which returned 6.8 million hits! The only way we will make real progress in this disease is through well-designed, controlled clinical trials. I strongly encourage your participation at an ALS Center near you —for yourself and for the future.
Each issue we feature a leading neurologist specializing in ALS responding to a question. If you would like to submit questions for a future Q & A, please send your questions to Amber Walters. Please understand that we won’t be able to address all questions and we won’t be able to respond to individuals personally.