Biohaven is trying to gather long term data to show that it slows down the progression of SCA. It will push for FDA approval in 2021, since it is well tolerated. Regarding slowing of the progression, I couldn’t tell. I have to rely on the data.
But since Biohaven is paying for all my travel related expenses, I have decided to go for one more year with BHV-4157 . It will keep me in the loop with Johns Hopkins Ataxia Center.
Although I am not too excited about BHV-4157, it will trigger other pharmaceutical companies to get in to the race. I have seen with many other drugs.BIOHAVEN SCA Study Fact Sheet 2019MAR04 V11 D.pdf (1.3 MB)
Thank you. After reading the initial info on this, I’ve always thought these were ‘blind trials’…but someone on another group said they knew they hadn’t been given the placebo. Do you know, is that the case if someone has been a ‘longtime’ participant, and has had optimistic results 
First it started as a “Blind Trial”. But after 3 months it was an open trial. Anyone whose SARA score went down during the trial, can decide to up his or her medication dose to 200mg a day. But since my SARA score remained steady, I stayed with 140mg/day dose. I will finish my 2nd. year of trial in Jan. 2020. They just extended it for one more year, so I will finish the study in Jan 2021. I am not aware if anyone deteriorated more then the natural progression, during the study. There is no data to support that. I know a lot of data manipulation goes in to show the good effects of BHV-4157. But I doubt, they will cook the books. As I said before, I am not too excited about BHV-4157. Some forms of symptomatic relief meds will be discovered before CRISPR with gene editing comes in.
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Johns Hopkins cancelled my appointment for March. Instead, I had a phone interview today. They are going to send 3 months of BHV-4157 and lab script by mail. This is my 3rd year of BHV-4157
Going on 3 years of the stuff! Noticed anything?
No difference in symptoms. Although the statistical analysis show slowing of the progression.
Thanks Shoaib for reply. Hope something positive comes out.