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ALS Worldwide
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ALS Worldwide
February 02, 2015

Rilutek (riluzole)

Rilutek, also known by its generic name of riluzole, is the only medication that is FDA-approved specifically for the systemic treatment of ALS (as opposed to medications that are approved only to treat particular ALS symptoms, such as Nuedexta.) It was originally developed by French pharmaceutical company Rhone-Poulenc Rorer, Inc., which became known as Sanofi-Aventis after a series of mergers and acquisitions. Rilutek helps to slow down the progression of ALS/MND and prolong survival. However, it is not a cure for ALS, and it does not reverse the nerve damage or muscle weakness characterized by the disease. Rilutek has been proven safe via extensive testing.

FDA approved in 1995, Rilutek has been used to treat ALS/MND for the past 20 years. In 2013, it became available as a generic called riluzole via three pharmaceutical companies (Apotex Corp., Glemark Generics and Sun Pharmaceuticals) and its cost is dramatically reduced. As expressed by WebMD, it is thought to work by protecting the nerves in the brain and spinal cord from excessive amounts of a natural substance called glutamate. Glutamate is a nonessential amino acid that is critical to normal brain function. In excess, glutamate may be part of the cause of nerve damage.

Rilutek may increase survival by 3-5 months. However, anecdotal and experiential evidence suggests that Rilutek is most effective in combination with other medications: it may have a synergistic (beneficially interactive) effect with Nuedexta and Dexpramipexole. The survival advantage may also be greater if you begin Rilutek as soon after diagnosis as possible.

It is particularly important to monitor liver enzymes while on Rilutek, at least for the first few months, as the medication can increase the risk of liver damage. Those with liver diseases such as hepatitis should be monitored especially carefully. 

Recommended initial dosage is 50 mg a day, and then, after a week, it should be increased to 50 mg morning and evening on an empty stomach. Studies that have examined dosage have found that 100 mg is better than is 50 mg, but that upping the dose to 200 mg offered no additional benefit.

The branded Rilutek is expensive. However, the generic, riluzole, has a retail price per capsule without insurance of $3/pill. Insurance can bring this cost down significantly. Medicare and the VA cover riluzole, and the National Organization for Rare Diseases can help support the cost if needed

No single drug or treatment should be viewed in isolation when dealing with ALS. The best bet is to tackle the disease with a comprehensive approach, including nutrition, respiratory therapy and support, physical therapy, occupational therapy, social support, and riluzole.

     If you or your physician have any questions or would like to discuss our viewpoints regarding this medication, please email us at [email protected]