ALS Drug Management

Studies all over the world are ongoing to develop more treatments and a cure for ALS. There are currently seven drugs approved by the U.S. Food and Drug Administration (FDA) to treat ALS and its symptoms: RELYVRIO, Radicava, Rilutek, Qualsody, Tiglutik, Exservan and Nuedexta.

Radicava™ (edaravone)
The FDA approved Radicava™ in 2017, making it the first new treatment specifically for ALS in 22 years. An oral formulation was approved in 2022.

Rilutek (riluzole, now generic)
This was the first FDA-approved drug available to treat ALS — in 1995. It inhibits glutamate release and prolongs life approximately three months. Riluzole is the generic name of Rilutek.

Qalsody (tofersen)
Approved by the FDA in March of 2023 for people that have the SOD1 gene mutation.  This is the first drug designed to target specific genes associated with ALS.

Tiglutik (thickened riluzole)
The first and only thickened liquid form of riluzole, Tiglutik was approved by the FDA in September 2018. This formulation contrasts with the oral pill form of riluzole that has been on the market for ALS for more than 20 years. It is designed to avoid potential problems of crushing tablets. Learn more.

Exservan™ (riluzole oral film)
An oral film formulation of riluzole, Exservan was approved by the FDA in November 2019. This formulation contrasts with the oral pill form of riluzole that has been on the market for ALS for more than 20 years and developed for patients with severe swallowing difficulties. The oral film is placed on top of the patient’s tongue and dissolves bypassing the need to swallow a pill or liquid.

Nuedexta®
Indicated for the treatment of pseudobulbar affect (PBA), which is characterized by frequent, involuntary, and often sudden episodes of crying and/or laughing that are exaggerated and/or don’t match how you feel. PBA occurs secondary to a variety of otherwise unrelated neurologic conditions. Nuedexta® (dextromethorphan HBr and quinidine sulfate) was FDA-approved in 2011.

With few FDA-approved drugs available for ALS, some people look for alternative treatments that could cure, reverse, or slow progression of the disease. These off-label treatments can come in the form of special diets, dietary supplements with vitamins, minerals, and herbs, or therapies such as acupuncture and energy healing.

Some alternative treatments have shown some promise in clinical trials. The majority of supplements that are advertised on the internet, however, do not have any hard evidence to back up claims that they are safe, effective, or clinically proven.

​Unlike prescription drugs, which must undergo a rigorous approval process, natural supplements in the United States are not regulated by the Food and Drug Administration (FDA). There are very few requirements in place to ensure the safety or quality of these alternative options.

A word of caution:
Unfortunately, there are some bad actors online who market unproven miracle cures to profit from people who are desperate to improve their conditions. Some people living with ALS have spent a lot of money on unproven alternative treatments that never yielded results. Some have even been physically harmed by unregulated alternative treatments.

So, if you hear about a special product or procedure that sounds too good to be true, it probably is. Be sure to do your research, and always consult with your neurologist, ALS clinic, or medical team before pursuing any alternative treatments.

How to make informed decisions:
Fortunately, there is a website that can help you make sense of alternative/off-label treatment options for ALS.

​On www.ALSUntangled.com, Duke ALS Clinic neurologist Dr. Richard Bedlack and over 100 clinicians and scientists from around the world objectively review and assign letter grades to alternative treatments that are of interest to people living with ALS.

​Dozens of completed reviews can help you see which alternative treatments show the most promise.

Your ALS Guide 2024-2025