Dietary supplements are a frequent, and often controversial, topic of conversation in the Amyotrophic Lateral Sclerosis (ALS) community. While there are plenty of anecdotal cases – as well as a limited body of research – indicating that some supplements may have benefits for people with ALS, the potential use of any supplements should always be discussed with your healthcare professional.
It is important to note that unlike drug treatments, supplements in the US are very loosely regulated. Supplement manufacturers face few requirements for quality control and, in some cases, may make claims about the effects of their products that are not based on scientific evidence.
However, because of the extremely limited treatment options available for the disease, many people living with ALS turn to a variety of over-the-counter supplements, as well as off-label prescription medications, to treat their symptoms. In order to help educate our community about how to safely approach these types of interventions, the ALS Therapy Development Institute (ALS TDI) recently hosted a virtual town hall discussion about supplements for people with ALS. We were joined by presenters Dr. Jinsy Andrews, co-chair of the Northeast ALS Consortium (NEALS) and Director of Neuromuscular Trials at Columbia University, and Dr. Merit Cudkowicz, Director of the Sean M Healey & AMG Center for ALS and Chief of Neurology at Mass General Hospital.
Drs. Andrews and Cudkowicz are both highly regarded researchers and clinicians with extensive experience trialing ALS treatments and advising people living with the disease. They offered a presentation about the current state of research into supplements for ALS, as well as advice about evaluating and choosing from the many supplements available.
According to Dr. Cudkowicz, supplements, or “nutraceuticals,” as they are also known, can be broadly defined as any over-the-counter product that is marketed as a dietary supplement with certain claimed benefits. She also addressed the use of “off-label,” or prescription medications that are approved and sold for other diseases, but at times might be prescribed by one’s doctor for treating symptoms of ALS. In either case, she emphasized that it is extremely important to consult your doctor before making any decisions about whether to introduce supplements or off-label medications into your treatment regimen.
“If someone is considering a supplement or off-label prescription,” she said. “You want to have the same rigor of science as you do for something that might be in a clinical trial. Just taking something because it’s available is not necessarily going to be helpful, and it could potentially be harmful. It's really important if you're thinking about supplements, to find out about the rationale [for its use to treat ALS], the data behind it, and to really use your medical care team to help with that information”
Dr. Cudkowicz emphasized that people with ALS should be especially careful when researching potential treatments on the internet. Particularly, they should be wary of advertising claims that rely on anecdotal evidence or sound too good to be true. In addition to consulting one’s medical team, she also recommended ALS Untangled, a website featuring in-depth reviews of potential supplements and off-label treatments for ALS by prominent researchers and clinicians in the field, as a valuable resource.
“My general philosophy is, I don't know where the cure for this illness is going to come from,” she said, “so I'm open to listening to anything, but with a critical eye. Often you don't know who's writing anecdotes and, in some situations, we know some companies have been putting up anecdotes that aren't real.”
For her portion of the presentation, Dr. Andrews explored some of the available scientific evidence for the efficacy, or lack thereof, of some common supplements and off-label treatments. She said that among the variety of supplements people take for ALS, some have been shown in studies to have a positive effect, others have been proven ineffective, and most need to be studied further. Additionally, many supplements and off-label drugs prescribed for ALS can have side effects that need to be carefully weighed against their potential benefits when deciding to add them to one’s treatment regimen.
Both Drs. Cudkowicz and Andrews cautioned people with ALS who are exploring supplements or off-label treatments to consider whether they wish to enroll in a clinical trial. The use of some common supplements can affect one’s eligibility to enroll in many clinical trials. This is often due to concerns about a supplement disrupting the efficacy data for the investigational treatment in question if it is also having a positive effect, as well as possible harmful interactions between the supplement and treatment.
As they repeatedly emphasized, the best way to make sure that a supplement or off-label medication is safe, worth the expense, and will not jeopardize your chances of accessing other treatments, is to discuss it in-depth with your physician and care team.
“There are continually new supplements and new combinations of supplements that come in,” said Dr. Andrews, “And sometimes we're not familiar with them. But having that conversation with your health care provider, and having someone help you look it up is really meaningful. Each person living with ALS has their own preferences about what they want to do and their own medical situation. You have to gauge that against what potential side effects can be caused by whatever it is they're looking at.”
Following their presentation, Drs. Andrews and Cudkowicz engaged in a discussion with the virtual town hall attendees, including several questions about individual supplements. To see a recording of the Town Hall event, including the entirety of their presentation and discussion, click here.
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