Hi, I am Bob and I have SCA6. I was diagnosed with SCA6 about 12 years ago. My doctor has told me about a drug called RILUZOLE And is it effective?

Hi inspectorgadget :slightly_smiling_face: Type Riluzole in the search box (look for magnifying glass symbol above right) to find several discussions re Riluzole :slightly_smiling_face: xB

Anyone in the trial with increased dosage ( 2 cap daily= 280mg) with BHV 4157 ? The first dose was given in March

:thinking: If you’re referring to Troriluzole, someone in another support group is doing well. Sara score 2yrs ago was 11, now 1.5
:slightly_smiling_face: xB

Thanks Beryl. I am still with BHV 4157 at 140 mg daily dose. Started at the end of January. Going to see my neurologist tomorrow at Johns Hopkins. Will ask her to increase the dosage to at least 200 mg a day

I talked with my neurologist about the dramatic improvement of SARA score after the increased dose of Trigriluzole ( BHV-4157 ). She was reluctant to believe it. I don’t qualify for increasing the dose of BHV4157 due to my stable SARA score. So I am still on 140 mg a day. My neurologist was at Las Vegas for the annual conference for Ataxia. There was a lot of discussion on Antisense Oligonuclieotides ( ASO ) for Spinal muscular atrophy ( SMA ) but not on CRISPR. Although READISCA is focused only on SCA1 and SCA 3, we should learn about other SCA’s in the near future.

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