Riluzole

[Rubinas85]

Hi

Has anyone been prescribed Riluzole for cerebellar ataxia?

[springlove]

What's it supposed to do?

[sunvox in reply to springlove]

It is designed to alleviate ataxic symptoms especially improvement of balance, but again it has proven to be no better than a placebo so far.

[sunvox]

Riluzole has been around for quite some time and has had several clinical trials. Unfortunately the results were inconclusive and not positive as one trial showed positive results but a second trial did not. Furthermore, the company that owns the patent came up with a re-formulation called BHV-4157 that they hoped would prove more efficacious. There is a discussion here:

livingwithataxia.org/t/trea...

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Notably one individual on that discussion group is reporting that BHV-4157 is helping her daughter, but another person on the discussion group says it did nothing for him.

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The clinical trial is ongoing:

clinicaltrials.gov/ct2/show...

[Rubinas85]

Is this just for SCA? Or cerebellar ataxia too? My mum was diagnosed a while back with cerebellar ataxia. Should there be a more specific diagnosis or is this just a general diagnosis?

[sudilan]

My husband has cerebellar ataxia and takes Madapar which helps with the tremors.

[vinupr]

yes. I took this medicine ...

[Rubinas85 in reply to vinupr]

Did it help at all?

[Hidden]

I have Cerebellar Ataxia, I have a Vegus Nerve Stimulator (V.N.S.) it helps alot I walk normal, I don't take any meds yet. You can watch a video on YouTube.