Rilutek® (riluzole)
Studies have shown that riluzole, approved by the U.S. Food and Drug Administration (FDA) in 1995, can extend the life of ALS patients for a few months, particularly if you begin taking it shortly after diagnosis.
Side effects are rare, but can include dizziness, nausea, weakness, drowsiness, stomach pain, and vomiting. Some people cannot tolerate it. Medicare, Medicaid, the VA, and many private insurance policies cover it. |
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If you decide to take riluzole, discuss with your ALS clinic team. For the first few months, you may need to have blood drawn to monitor your liver function enzymes.
If you have trouble swallowing pills, the FDA approved a liquid form of riluzole called Tiglutik in 2018.
If you have trouble swallowing pills, the FDA approved a liquid form of riluzole called Tiglutik in 2018.
Radicava® (edaravone)
Radicava has received mixed reviews, and there is less evidence than for riluzole that it slows the progression of ALS. In 2017, the FDA approved Radicava to treat ALS after just one six-month clinical trial in Japan in which the drug maker claimed that Radicava slowed the decline of physical function by 33%.
Since its release, there have been no other clinical trials. Some studies and reviews have highlighted its benefits, though others have questioned Radicava’s effectiveness. Benefits may be more likely if you begin early in your disease progression.
Taking Radicava is a big commitment. Due to the frequency of intravenous infusions (IVs), patients often have a central line placed in their chest. Radicava is administered 14 days in a row to start, and then 10 days a month every month after that. Potential adverse reactions include bruising and trouble walking. Radicava can also be expensive. It is typically covered under Medicare Part B. Coverage through private insurance varies.
The Radicava website addresses many common questions. Ask your neurologist, ALS clinic team, and local ALS organization for their thoughts on whether you should take it.
Since its release, there have been no other clinical trials. Some studies and reviews have highlighted its benefits, though others have questioned Radicava’s effectiveness. Benefits may be more likely if you begin early in your disease progression.
Taking Radicava is a big commitment. Due to the frequency of intravenous infusions (IVs), patients often have a central line placed in their chest. Radicava is administered 14 days in a row to start, and then 10 days a month every month after that. Potential adverse reactions include bruising and trouble walking. Radicava can also be expensive. It is typically covered under Medicare Part B. Coverage through private insurance varies.
The Radicava website addresses many common questions. Ask your neurologist, ALS clinic team, and local ALS organization for their thoughts on whether you should take it.
Nuedexta®
For ALS patients who experience pseudobulbar affect (PBA), which is characterized by sudden and unpredictable episodes of laughing or crying, Nuedexta is an FDA-approved oral medication that can help regulate emotional control.
Patients take two capsules per day and side effects are rare. A secondary benefit is that Nuedexta may improve speech and swallowing for some patients whose bulbar muscles have been affected. |
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Other treatments for ALS
Prescription drugs are not the only way people living with ALS can address symptoms, have a better quality of life, and potentially live longer.
- Studies have shown that attending an ALS clinic regularly can help extend your life by one year or more, in addition to improving your quality of life.
- Respiratory equipment, such as a bilevel machine, may also help you live longer. When breathing becomes more difficult, some people choose to extend their lives by getting a tracheotomy and going on full-time mechanical ventilation, though this requires 24/7 care.
- Getting a feeding tube can help you maintain your weight, have more energy, and get adequate nutrition and hydration.
- Some people living with ALS choose to explore non-pharmaceutical treatments such as supplements. Some alternative treatments have received positive clinical trial results.
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