Protocol · Neurological Health
ALS Supportive Care Protocol
Does any supplement in the ALS supportive care stack slow the disease? None has been shown to. The stack lists vitamin D, CoQ10, creatine, fish oil, vitamin E, a B-complex, alpha-lipoic acid and extra protein. In trials, creatine, CoQ10 and vitamin E did not slow decline or lengthen survival. Very high-dose methylcobalamin, a form of vitamin B12, slowed decline in one trial of people diagnosed early, but it was injected, not swallowed. Vitamin D is for correcting a deficiency, and the top of the listed vitamin E range is a high dose with risks of its own. Supplements go alongside, never instead of, riluzole, edaravone and care from a multidisciplinary ALS clinic.
Sources: PMID 23235621; PMID 19743457; PMID 11465936; PMID 15517433; PMID 35532908; PMID 32849187; PMID 15537682; PMID 42113599
We are re-verifying the studies cited on protocol pages; only confirmed citations are shown.
What the evidence says
- Creatine: no benefit in trials. A Cochrane review pooled 3 trials with 386 people taking creatine 5 to 10 g a day or placebo. Creatine did not change survival or the rate of decline on the ALS functional rating scale, and breathing capacity trended slightly worse, though not significantly. It was well tolerated, with no sign of kidney failure.
- CoQ10: not promising enough to test further. In a trial of 185 people, CoQ10 at 2,700 mg a day for 9 months, a higher dose than the stack lists, did not slow decline on the ALS functional rating scale enough to justify a larger trial, and secondary measures showed no difference from placebo. There were no safety concerns.
- Vitamin E: two trials, both negative on their main outcomes. In 289 people already taking riluzole, alpha-tocopherol 500 mg twice a day for one year did not change motor function or survival, though fewer people moved to a more severe stage on one secondary scale. In 160 people, 5,000 mg a day for 18 months did not change survival. A Cochrane review of antioxidants found insufficient evidence that any of them helps.
- Vitamin B12: the positive trial used injections. In 130 people diagnosed within 1 year of onset, 50 mg of methylcobalamin injected into muscle twice a week for 16 weeks slowed decline on the ALS functional rating scale by 1.97 points compared with placebo. An earlier trial of 373 people found no benefit overall, only in a subgroup who started early. Neither trial tested an oral B-complex.
- Vitamin D: no effect on ALS itself. In 48 people with low vitamin D given one of three monthly doses, motor decline after 6 months did not differ by dose; the trial had no placebo group. A review of 13 studies found no evidence for vitamin D as an ALS treatment, but advised correcting a deficiency to avoid other health problems.
- We found no trials of fish oil or alpha-lipoic acid supplements in people with ALS. In 449 people in an ALS drug trial, higher blood levels of alpha-linolenic acid, a plant omega-3, went with longer survival, but that is an association, not a test of a supplement. In ALS mice, EPA from fish oil shortened lifespan when started before symptoms. An ALS expert review found no published alpha-lipoic acid trials and could not endorse it.
Safety and when to see a clinician
- Supplements go alongside, never instead of, care from an ALS clinic. Riluzole and edaravone slow progression by up to 2 to 4 months, and multidisciplinary teams of neurologists, nurses, therapists, dietitians and social workers are linked to 4 to 7 months longer survival and better quality of life. In a Cochrane review, riluzole 100 mg a day raised median survival from 11.8 to 14.8 months. No supplement here should be taken as a way to slow the disease.
- Vitamin E at the top of the listed range is a very high dose. In a review of 19 trials, 400 IU a day or more was linked to a small rise in deaths from any cause, and a review of 9 trials found vitamin E raised the risk of bleeding strokes by 22%. The ALS trials reported no major side effects, even at 5,000 mg a day. Ask before combining high-dose vitamin E with warfarin or aspirin.
- Weight loss predicts a worse outlook in ALS, so ask the ALS team's dietitian to track your weight, calories and protein. In 201 people taking riluzole, an extra 405 kcal a day of fat did not lengthen survival overall, though fast progressors did better in a later analysis. A review of trials with 311 people found high-calorie supplements safe and well tolerated, but they did not clearly improve weight or function.
- Tell your ALS team promptly about breathlessness, waking with headaches, needing to sleep propped up, choking or coughing with food or drink, or losing weight. These can be signs that breathing or swallowing muscles are weakening.
The stack
8 supplements · 1 graded
| Grade | Supplement | Amount listed | Why it’s in the stack | Evidence on file |
|---|---|---|---|---|
| Primary stackThe core of this protocol | ||||
| Vitamin D | Amount listed: 2,000–5,000 IU daily (target 40–60 ng/mL, monitor levels) | Deficiency common in ALS; neuroprotective effects; may support muscle function | Not graded yet | |
| Coenzyme Q10 | Amount listed: 300–1,200 mg daily in divided doses | Supports mitochondrial function; antioxidant properties may help protect motor neurons | Not graded yet | |
| Supporting stackListed as additions to the core | ||||
| Creatine | Amount listed: 5–10 g daily | Supports energy metabolism in muscles; may help maintain muscle strength
| Grade D for Amyotrophic Lateral Sclerosis Symptoms6 studies · 386 people | |
| Omega-3 Fatty Acids | Amount listed: 2–3 g EPA+DHA daily | Anti-inflammatory and neuroprotective effects; may support overall health | Not graded yet | |
| Vitamin E | Amount listed: 400–2,000 IU daily (mixed tocopherols) | Antioxidant; may help reduce oxidative stress contributing to motor neuron damage | Not graded yet | |
| B Vitamins | Amount listed: B-complex with B12 1,000 mcg, folate 800 mcg daily | Support nerve function and energy metabolism; B12 particularly important for neurological health | Not graded yet | |
| Alpha-Lipoic Acid | Amount listed: 600–1,200 mg daily | Antioxidant that crosses blood-brain barrier; may help reduce oxidative stress | Not graded yet | |
| Protein Supplementation | Amount listed: 1.2–1.5 g protein per kg body weight daily | Maintains muscle mass and nutritional status; essential for ALS patients with swallowing difficulties | Not graded yet | |