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Treatment and Trials

As you have no doubt been told, there is currently no cure for ALS. There are, however, three FDA approved drugs that may help slow down the progression of ALS for some patients. Similarly, there are over twenty clinical trials underway right now with the goal of finding additional treatments. And there are also a number of supplements that have been explored for treating ALS.

To help you wade through these options, we’ve broken them down for you below with links to more detailed resources. A note of caution: just because you see something here doesn’t mean you should take it. Instead, you should always consult with your treating physician before taking any new medication or supplement.

Treatments

There are currently three FDA approved treatments to combat ALS:

  • Riluzole (also known as Rilutek and Tiglutik) was the first drug approved by the FDA to treat ALS. As of this year, it is available in two forms: pill form as Rilutek and now in a liquid form as Tiglutik. To find out more about Riluzole, click here. To find our more about Rilutek, click here.
  • Radicava (also known as Edaravone) is a recurring infusion that was approved by the FDA in 2017. To find out more about Radicava, click here.
  • Finally, Nuedexta is approved to treat PsuedoBulbar Affect, which is the occurrence of unusual laughing or crying in ALS patients. To find out more about Nuedexta, click here.

For treatments that are yet approved by the FDA, there are two pathways by which patients can seek to obtain access to drugs. These pathways require approval from the FDA and/or the company that manufactures the drug. ALS patients have encountered issues using both pathways in the past; however, the ALS community and I AM ALS are working to change that. For more information on each, click below:

Expanded Access Program

Right to Try

Trials

In addition to these drugs, researchers, drug companies, and biotechs are currently exploring potential new treatments for ALS through clinical trials.

As we begin 2019, there are more than 20 different drugs in clinical trial testing. For a list of some of those drugs, click here.

As an ALS patient the question of whether to participate in a clinical trial will be one that you grapple with regularly. If you are not familiar with what clinical trials are or simply want a refresher, click here for a clinical trials 101 Tutorial.

If you are ready to search for a clinical trial you will find that many websites offer search engines to help you identify potential trials. When you do, you may wonder which is best. The short answer is that they all extracting their data from the same database called clinicaltrials.gov. The difference between these websites is how they present the data from this database and facilitate your search. We’ve included below some of the leading search engines in the hopes that you find one that is the most intuitive for you:

Supplements

Finally, if you are interested in taking supplements–meaning an off-label treatment that has not been approved by the FDA–you will not be the first nor last ALS patient.

  • In response to this demand, Dr. Richard Bedlack and his colleagues at Duke have created a website called ALSUntangled through which they have assessed the effectiveness and safety of dozens of supplements. Click here to explore their findings.
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