Inosine is a low-cost and widely available nutritional supplement in a capsule form, available without a prescription.
A few studies (here and here) have shown that ALS patients with higher uric acid (also known as urate) levels in their blood tend to have a slower disease progression independent of other factors. What is not currently known is whether it is the higher uric acid level itself, or some other factor that a high uric acid level is a symptom of, that causes that slower disease progression. It is presumably for that reason the following two studies were commissioned- to answer the question of whether raising uric acid levels, with Inosine, can slow ALS progression.
Safety of Urate Elevation in Amyotrophic Lateral Sclerosis (ALS) (SURE-ALS2)
This trial was started in October 2017 and is currently ongoing. It will involve 30 ALS patients over a 20 week period. This is a Phase 2 study still looking primarily at safety and tolerabiity, not effectiveness. Results are expected in January 2020.
A Pilot Study of Inosine in Amyotrophic Lateral Sclerosis (ALS)
This Phase 1 clinical trial involved 32 ALS patients and was completed in March of 2016. It showed that Inosine was safe and well-tolerated. It did not look for effectiveness but rather the safety and the levels of a few biomarkers after 12 weeks of treatment.
High uric acid levels can be dangerous, and result in extremely painful conditions like gout and kidney stones. Despite its availability, supplementing with Inosine should not be done without a doctor's supervision. Trial 2 is targeting blood serum urate (uric acid) levels of 7-8 mg/dL. In order to achieve and maintain that level, patients must be monitored especially when first starting Inosine. Levels should be checked weekly (with a blood test) until they stabilize in the desired range, after which levels should be checked monthly.
I had been on Inosine for a few months when I had to discontinue its use 30 days prior to enrolling in the BrainStorm Phase 3 Trial. I had continued progression during that time, but I was only also on Riluzole and Lunasin at the time. During my time in the trial, Lunasin was not shown to be effective in a study by Dr. Richard Bedlack at Duke University. I started up Inosine again beginning on October 19, 2018, the day I completed my BrainStorm Phase 3 Trial involvement. I previously stabilized at (2) 500mg pills daily and that is what I am currently taking.