I just finished one year trial of BHV-4157. So far I know, it did not improve the symptoms better then the placebo.
37% of people with hereditary SCA is also sensitive to Gluten . It may be be worthwhile looking into it.
Hi Shoaib,
I definitely agree. I am very sensitive to gluten and initially thought I had gluten ataxia since I had no relatives with it and knew nothing about it. I am also quite sensitive to dairy products. I also eliminate soy, preservatives, starchy vegetables, most fruit, nuts, all cooking oils which means I live on grass fed beef, chicken and fish with only salt and pepper for seasoning. I eat organic romaine lettuce, asparagus, squash and air popped popcorn sometimes. That’s pretty much my diet. Very boring but I’m still walking at this point. I found some gluten free, dairy free, nut and soy and egg free cookies that I really enjoy a bit too much.
Thanks for the advice. It’s definitely good for me!
Piper
Hey Shoaib, join the club! I just finished 49 weeks of this waste of time on this clinical trial. You know what is funny, I went to the Ataxia conference held in Philly recently and there was a representative from Biohaven who went over so far the results. He had the gall to say “they” noticed a 1% change in their participates!! They have got to be kidding!! My suggestion, get lab results on your Liver. I have a funny suspicion they are testing to see if it is safe to take. Money… Money…
I read about the disappointing results re Trigriluzole. It was said to be less toxic to the Liver than Riluzole, which must have given hope to a lot of people. As I recall, the search is now on for ‘something’ with less side effects 
xB
I understand your frustration and anger. I agree that the bottom line for these pharmaceutical companies are financial. SCA being categorized as a “rare disease”, makes the financial incentive less. But that’s how the world works. I have two choices: 1) Either to give up and go down rapidly, or 2) to fight back with daily exercise, muscle relaxants and a positive attitude. There’s no cure, but it sure can slow down the progression. It’s hard, when you cannot walk or talk properly. But at least I know I am not “undiagnosed” or " misdiagnosed" and remain in the front line, waiting for new discovery.
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I had “Dermatitis Herpetiformis” from Gluten in 2009. But read about gluten ataxia and it’s effect on the cerebellum. There’s so much to know. I hope I can see some breakthrough in my lifetime.
Has anyone heard about Saniona and Cadent Therapeutics working on CAD-1883? https://globenewswire.com/news-release/2018/03/12/1420518/0/en/Saniona-AB-Saniona-s-partner-Cadent-Therapeutics-initiates-Phase-1-trial-for-joint-ataxia-and-tremor-program.html
With research ongoing in so many different areas it can be hard to keep up. On Friday, I met up with a friend whose tremors have been life changing, I hope there are good results from this xB
Im a veteran as well! I was diagnosed in 85 right after AB school at FT. Benning. Since then, I’ve been staying active but this crap caught up with me 6-7 years ago! You know, its really irritating when you walk drunk and you look like you’re are in good shape but can’t run! I keep working out because some day, they will have a treatment.
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Unfortunately for us, this illness is an invisible illness when a person is not having to use any aids. Some folks out there have some awful stories to share.
Hi, I believe my daughter is a one percent. She is getting better with the drug Trigriluzole and I hope she can stay on it. Her tremors have decreased and she is able to work and go to school. For awhile she could not do either. I want her to continue on this drug. The study is almost over and it is upsetting that more people did not benefit from this, but I do know there was another person who benefited from this that was on this site. My daughter has SCA8 and I wonder if it works differently for her type. She has not fallen in a long time due to imbalance. She attempts more things like climbing up small ladders which makes me nervous. Until there is something better out there. There are more studies coming out and it is wonderful that so many people participate, you are appreciated.
Super to hear. Hope her improvement continues.
Thank you so much for your encouragement. 
I am so happy for your daughter. I have SCA-6 and just finished a year of Trigriluzole (AKA BHV-4157 ). Unfortunately, it did not have any positive effect on me. It is possible that it works for SCA-8 and not for SCA-6. Can you continue to get the drug from Biohaven? I hope so. If not, your neurologist can prescribe something chemically similar. That’s what I was talking to my neurologist before I started the drug.