What supplements can slow ALS progression?

I’m a 41-year-old Australian living with ALS. Since diagnosis, I’ve been thrown into the deep end of research, reading trials, talking to others in the community, and experimenting with supplements. This post is not medical advice, just a raw look at what the science suggests might help slow things down.

Let’s be honest. There’s no miracle pill. No supplement that proves it can stop ALS in its tracks. The drugs on offer barely shift the average, maybe buying you a few extra months. That’s the official line.

But people with ALS don’t have time to wait for perfect science. We don’t get decades of trials and neat graphs. We get a countdown. That’s why many of us dive headfirst into the messy world of supplements and off-label drugs.

Recently, a team reviewed 15 years of data and pulled out eight options that, in small flawed trials, showed a glimmer of benefit. They’re not cures. They’re not guarantees. But they’re interesting. And in some cases, they’re cheap, safe, and already sitting on pharmacy shelves.

The Scientific and Therapeutic Rationale for Off‐Label Treatments in Amyotrophic Lateral Sclerosis

Here’s what they are, in plain English.

1. Acetyl-L-Carnitine
   This is basically fuel for your cells. It helps shuttle fat into mitochondria, the little batteries inside neurons. The thinking is: if you can keep those batteries working, neurons might hold out longer. A trial hinted it could help people maintain basic functions like swallowing and walking a little longer.

2. Antiretrovirals
   These are HIV drugs. Why would they matter? Because some retroviruses may play a role in ALS. A small trial found people on a combo pill called Triumeq slowed their decline. It’s messy science, but if viruses are part of the story, these drugs might knock them back.

3. Clenbuterol
   Technically an asthma drug. Unofficially, it’s been used by athletes to build muscle. In ALS, it may help protect muscle and mitochondria while calming inflammation. A small group showed slower breathing decline and even stronger grip strength.

4. L-Serine
   An amino acid, something your body already makes. It may block toxic proteins from forming, calm inflammation, and improve gut health. At very high doses, people taking it slowed down compared to matched controls.

5. Methylcobalamin
   This is vitamin B12, but in a super high-dose injectable form. Not your daily multivitamin. In Japanese trials, people who started it early lived longer and declined slower. It seems to protect against nerve toxicity and reduce inflammation.

6. Nicotinamide Riboside + Pterostilbene
   Marketed as “Basis,” a fancy anti-aging supplement combo. It boosts NAD+, which helps cells manage energy and stress, while pterostilbene acts as an antioxidant. A small ALS trial reported better muscle strength and slower decline. The catch: it was short, tiny, and run by the company that sells it.

7. Quinidine + Dextromethorphan (Nuedexta)
   This is an existing drug for emotional outbursts, but in ALS trials it improved speech, swallowing, and drooling. It doesn’t stop the disease, but it helps with some of the most brutal day-to-day symptoms.

8. Tamoxifen
   Best known as a breast cancer drug. It seems to reduce oxidative stress, calm inflammation, and even tweak the microbiome. In small ALS studies, people on higher doses declined slower and lived longer.

So what’s the takeaway?

None of these are silver bullets. They’re not cures. But they scratch at the edges of ALS in ways that feel worth paying attention to.

Some boost mitochondria. Some fight inflammation. Some block viruses. And some simply make life a little less miserable.

If you’re living with ALS, the system tells you to wait. But waiting has a body count. That’s why people in the community are already experimenting, already stacking supplements, already trying to wrestle a little more time out of a disease that offers none.

The science may be slow, but the clock isn’t.

My current stack

I’m currently taking 1 (Acetyl-L-Carnitine), 5 (Methylcobalamin in high-dose sublingual form), 6 (Nicotinamide Riboside + Pterostilbene), and 7 (Nuedexta), alongside a number of other supplements as part of my personal stack.

I also built StackDat to organize my complex health regimen, so I can track what I’m taking, why I’m taking it, and easily share that structure with others.