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Darifinacin?
Darifinacin is an approved over-active bladder medicine (available as a generic) that is currently being investigated in a Phase 2 clinical trial for its potential to treat amyotrophic lateral sclerosis (ALS). The two trial sites are in Montreal (NCT06249867). The drug is being repurposed
based on preclinical research suggesting it may improve the function of
neuromuscular junctions (NMJs), which are connection points between
nerves and muscles. Since it is FDA approved, is anyone taking it “off-label” for ALS? If so, what has been your experience? -
3 Replies
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I heard a talk regarding this study on EverythingALS back around June 2025. I got a prescription and started myself on Darifenicin around early July, and know that there were a couple of people also in the EverythingALS group that are on it (one was in the study, and another was just doing it open label as I am.).
Aside from the benefit of not needing to urinate as often (especially overnight) I have thus far noticed no improvement; i.e., no change in my ALS progression. One of the gentlemen in the EverythingALS forum believed that he started to notice a slowing up progression (or even possible improvement?) after about 10 weeks on darifenacin.
I continue to lose about a point per month on my ALSFRS – R score.
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I’ve been taking Solifenacin for six months for overactive bladder. I wonder if it is similar enough to have the same therapeutic effect as darifenacin. Anyone know? Regardless, I’ll be asking my urologist to switch me to darifenacin.
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I was taking Tolteradine for about 3 years and then added Gemtesa for bladder issues. My urologist switched me to Solifenacin when Gemtesa was no longer covered by insurance. I’ve not seen any slowing of my ALS since being on these drugs. I’m a very slow progressing having ALS for over 22 years. I’ve lost 2-3 FRS points in the last 10-12 years. I may get my urologist to swap me to the other drug if results show it can help.
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