Medical Treatments for ALS
So far, there are no treatments that arrest or reverse the disease, but there are treatments for symptoms and for prolonging life and maximizing function.
Rilutek (riluzole) is approved for use in treatment in ALS and has been shown to prolong life by three months on average. Some may benefit more than others. Blood work is required while taking this drug. This drug is very expensive.
- Dosage, Adult (usual): 50mg twice daily before morning and evening meals.
- Adverse Effects: fatigue, liver test abnormalities, low white blood count, nausea, and fatigue.
- Drug Interactions: sulfasalazine (azulfidine)
Anti-oxidant vitamins: There is theoretical but no proven benefit from antioxidant vitamins. Beta carotene (10,000 IU), vitamin C (1,000 mg daily), and vitaminE (400 IU three times daily) are used by some patients but of unproven benefit. We recommend them.
Coenzyme Q10(CoQ10) is used by some patients, but studies have not shown benefit. 200 mg per day is optional therapy.
Creatine, a protein supplement, has been used but studies have been negative at 5-10 grams per day. We do not currently recommend it, but it is not harmful.
Research into other drugs to arrest ALS is ongoing. There is no evidence that chelation, other supplements, or alternative medicine is helpful. Empiric use of experimental drugs is not recommended since they could make things worse. Stem cell treatment is not available in the US and is not recommended at this time. Safety studies using stem cells are beginning, but no treatment studies have started.
We understand that patients often chose unconventional therapies that we do not recommend, and our primary message is to avoid treatments that can make you worse, like diets that cause weight loss. Overall, we urge caution. We can discuss these issues with you at clinic visits. Some treatments may be harmful, and many people don’t mind profiting from your situation. Some of these issues have been addressed by neurologists in ALS Untangled, and 60 minutes exposed fraudulent stem cell therapy from Mexico.
Soon after ALS is diagnosed, we recommend maintaining weight or even gaining weight through a generally healthy diet and do not have any particular dietary recommendations during the early stages. In particular, we do not recommend any particular “fad” diets.
Therefore, in the early stages, we recommend the above regimen and mostly suggest trying to maintain as normal of a healthy lifestyle regimen as possible.
