# Potential First-in-Class Therapy for Spinocerebellar Ataxia **URL:** \ **Category:** General\ **Created:** [May 17, 2017, 6:50am UTC](https://forum.livingwithataxia.org/t/potential-first-in-class-therapy-for-spinocerebellar-ataxia/5831 "2017-05-17T06:50:05Z")\ **Posts on this page:** 20\ **Page:** 3
**Author:** ![Jtadej](https://avatars.discourse-cdn.com/v4/letter/j/e56c9b/32.png) [@Jtadej](https://forum.livingwithataxia.org/u/Jtadej)\ **Post date:** [November 5, 2017, 2:34pm UTC](https://forum.livingwithataxia.org/t/potential-first-in-class-therapy-for-spinocerebellar-ataxia/5831/41 "2017-11-05T14:34:59Z")
I’ve been on “real” drug for 12 weeks through the clinical trial at UCLA. I have noticed significant improvement in standing and walking. My diagnosis is SCA1. The drug works by stopping the death of Perkingy cells in the cerebellum. The brain is capable of making new brain cells, but only if the rest of the body is in very good health. Even doctors were not aware of the brains ability to regenerate until the 1990”s. Read Dave Asprey’s book, HEAD STRONG. I’ve changed my way of eating, exercise, meditation and several other factors. Biohavens drug is not a magic pill, but if you’re willing to make lifestyle changes along with taking the drug; it does feel like magic. In May I was shopping for canes and walkers. Now I walk normally and started playing golf again. Keep strong and keep trying. ---
**Author:** ![cynthiaf](https://avatars.discourse-cdn.com/v4/letter/c/f19dbf/32.png) [@cynthiaf](https://forum.livingwithataxia.org/u/cynthiaf)\ **Post date:** [November 5, 2017, 3:07pm UTC](https://forum.livingwithataxia.org/t/potential-first-in-class-therapy-for-spinocerebellar-ataxia/5831/42 "2017-11-05T15:07:31Z")
Hi. I am so happy to hear about your success. We are also at UCLA. Love the Doctor. My daughter thank goodness is taking nutrition in College. She had to drop out last year because of her Ataxia now is able to concentrate again. She is taking good care of her body with food and exercise. She still has the depression but has doctors helping her with this. She is 21 and has started showing symptoms at 16. This was hard for her to cope at such a young age. I am so excited about her future with this new treatment. How was your SARA score and how much did it change if I may ask. Thank you so much for your voice\_. I’m am so happy for you!! They better approve this in 2018. Lol. ---
**Author:** ![Jtadej](https://avatars.discourse-cdn.com/v4/letter/j/e56c9b/32.png) [@Jtadej](https://forum.livingwithataxia.org/u/Jtadej)\ **Post date:** [November 5, 2017, 3:31pm UTC](https://forum.livingwithataxia.org/t/potential-first-in-class-therapy-for-spinocerebellar-ataxia/5831/43 "2017-11-05T15:31:19Z")
I saw Dr. Perlman on Thursday and my score improved another 2 points. When I walked down the hall for her, she said if she didn’t know, she wouldn’t notice anything unusual with the way I walk. People don’t whisper to my wife, “What’s wrong with him?” anymore. I didn’t get diagnosed until age 55, I’m 59 now. I know it progresses faster when patients show symptoms at a younger age. My nephew is 41 and has worse problems walking than I do. I wish your daughter the best; good luck. ---
**Author:** ![cynthiaf](https://avatars.discourse-cdn.com/v4/letter/c/f19dbf/32.png) [@cynthiaf](https://forum.livingwithataxia.org/u/cynthiaf)\ **Post date:** [November 5, 2017, 4:02pm UTC](https://forum.livingwithataxia.org/t/potential-first-in-class-therapy-for-spinocerebellar-ataxia/5831/44 "2017-11-05T16:02:27Z")
Yes it seems people are showing symptoms younger and younger. Thank you for sharing. I may be the carrier of the disease but have not shown any significant symptoms. I am 55 years old. I wish your nephew the best in the future. Maybe he can start the meds next year. I am sure you are giving him hope with your participation in the study. ---
**Author:** ![Punk](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwithataxia.org/punk/32/5050_2.png) [@Punk](https://forum.livingwithataxia.org/u/Punk)\ **Post date:** [November 6, 2017, 6:10pm UTC](https://forum.livingwithataxia.org/t/potential-first-in-class-therapy-for-spinocerebellar-ataxia/5831/45 "2017-11-06T18:10:24Z")
My daughter has sca2 and to be honest a cure would be great but right now some form of treatment to halt progression would be all we could wish for ---
**Author:** ![cynthiaf](https://avatars.discourse-cdn.com/v4/letter/c/f19dbf/32.png) [@cynthiaf](https://forum.livingwithataxia.org/u/cynthiaf)\ **Post date:** [November 6, 2017, 6:52pm UTC](https://forum.livingwithataxia.org/t/potential-first-in-class-therapy-for-spinocerebellar-ataxia/5831/46 "2017-11-06T18:52:40Z")
AMEN!!! I wish it got approved already. Now there is hope. ---
**Author:** ![henry.n](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwithataxia.org/henry.n/32/3544_2.png) [@henry.n](https://forum.livingwithataxia.org/u/henry.n)\ **Post date:** [November 6, 2017, 10:28pm UTC](https://forum.livingwithataxia.org/t/potential-first-in-class-therapy-for-spinocerebellar-ataxia/5831/47 "2017-11-06T22:28:14Z")
Hey Punk, I feel like you do. I have SCA 2 and tomorrow marks being on this clinical trial for 22 weeks!!! I wish this would halt my progression. It has been such a waste of time. ---
**Author:** ![cynthiaf](https://avatars.discourse-cdn.com/v4/letter/c/f19dbf/32.png) [@cynthiaf](https://forum.livingwithataxia.org/u/cynthiaf)\ **Post date:** [November 7, 2017, 6:28am UTC](https://forum.livingwithataxia.org/t/potential-first-in-class-therapy-for-spinocerebellar-ataxia/5831/48 "2017-11-07T06:28:23Z")
Hi Henry I’m glad you are still in the study. I thought you gave them back the meds. I hope you feel some results soon. Don’t give up!! Thinking about you. 🙏🏼 ---
**Author:** ![Punk](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwithataxia.org/punk/32/5050_2.png) [@Punk](https://forum.livingwithataxia.org/u/Punk)\ **Post date:** [November 7, 2017, 9:03am UTC](https://forum.livingwithataxia.org/t/potential-first-in-class-therapy-for-spinocerebellar-ataxia/5831/49 "2017-11-07T09:03:47Z")
Hi Henry have you any feeling that progression may be halting in any way? Have the doctors said anything? Hope you keep on fighting mate. The thing I don’t understand about this trial is that I thought it had failed so why are you both still taking the meds? ---
**Author:** ![cynthiaf](https://avatars.discourse-cdn.com/v4/letter/c/f19dbf/32.png) [@cynthiaf](https://forum.livingwithataxia.org/u/cynthiaf)\ **Post date:** [November 7, 2017, 5:20pm UTC](https://forum.livingwithataxia.org/t/potential-first-in-class-therapy-for-spinocerebellar-ataxia/5831/50 "2017-11-07T17:20:25Z")
Hi. The second phase was not convincing enough for FDA to approve it. We are now in the 3rd phase of the study which will give more time to see the effects of the meds. The second part of the study which was only 8 weeks did have a lot of positive results but not enough for the FDA. 🙁 ---
**Author:** ![Punk](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwithataxia.org/punk/32/5050_2.png) [@Punk](https://forum.livingwithataxia.org/u/Punk)\ **Post date:** [November 7, 2017, 6:15pm UTC](https://forum.livingwithataxia.org/t/potential-first-in-class-therapy-for-spinocerebellar-ataxia/5831/51 "2017-11-07T18:15:17Z")
So this may still be of benefit Cynthia? ---
**Author:** ![cynthiaf](https://avatars.discourse-cdn.com/v4/letter/c/f19dbf/32.png) [@cynthiaf](https://forum.livingwithataxia.org/u/cynthiaf)\ **Post date:** [November 7, 2017, 7:00pm UTC](https://forum.livingwithataxia.org/t/potential-first-in-class-therapy-for-spinocerebellar-ataxia/5831/52 "2017-11-07T19:00:39Z")
Absolutely. It is helping others as you can see in the other posts. ---
**Author:** ![henry.n](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwithataxia.org/henry.n/32/3544_2.png) [@henry.n](https://forum.livingwithataxia.org/u/henry.n)\ **Post date:** [November 8, 2017, 5:03pm UTC](https://forum.livingwithataxia.org/t/potential-first-in-class-therapy-for-spinocerebellar-ataxia/5831/53 "2017-11-08T17:03:02Z")
Hi Punk, no the progression is not halting and the Doctors are not saying anything. I strongly believe that this trial is a way for us to prove that the pill is not effecting our liver and it is safe to take. I urge everyone taking the pill to request the blood lab results! For me, just completed 22 weeks with worse results! I am really glad other people have positive results. ---
**Author:** ![Punk](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwithataxia.org/punk/32/5050_2.png) [@Punk](https://forum.livingwithataxia.org/u/Punk)\ **Post date:** [November 8, 2017, 6:09pm UTC](https://forum.livingwithataxia.org/t/potential-first-in-class-therapy-for-spinocerebellar-ataxia/5831/54 "2017-11-08T18:09:48Z")
Sorry to hear that Henry ---
**Author:** ![Beryl\_Park](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwithataxia.org/beryl_park/32/5716_2.png) [@Beryl\_Park](https://forum.livingwithataxia.org/u/Beryl_Park)\ **Post date:** [November 9, 2017, 11:41am UTC](https://forum.livingwithataxia.org/t/potential-first-in-class-therapy-for-spinocerebellar-ataxia/5831/55 "2017-11-09T11:41:01Z")
I’m sorry to hear such ‘disappointing’ news Henry. Trigriluzole is supposed to be less toxic, were you previously taking Riluzole 🤔xB ---
**Author:** ![henry.n](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwithataxia.org/henry.n/32/3544_2.png) [@henry.n](https://forum.livingwithataxia.org/u/henry.n)\ **Post date:** [November 9, 2017, 4:56pm UTC](https://forum.livingwithataxia.org/t/potential-first-in-class-therapy-for-spinocerebellar-ataxia/5831/56 "2017-11-09T16:56:37Z")
Thanks Beryl\_Park, No i wasn’t taking Riluzole. I am sorry if I was sounding like “Debbie downer”. It is so tough getting used to this that I lash out but I will stay the course and try to stay positive. Keep the faith! ---
**Author:** ![henry.n](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwithataxia.org/henry.n/32/3544_2.png) [@henry.n](https://forum.livingwithataxia.org/u/henry.n)\ **Post date:** [December 8, 2017, 4:23pm UTC](https://forum.livingwithataxia.org/t/potential-first-in-class-therapy-for-spinocerebellar-ataxia/5831/57 "2017-12-08T16:23:31Z")
An update, went to Columbia for follow-up after 26 weeks on pill. Nothing new to comment just the same. Actually worse. Going on Monday to a Neuro surgeon who is treating patients with Parkinson. He uses electrical stimulation for treatment. I want to pursue tDCS [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4318979/](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4318979/). Does anybody have any experience using tDCS? ---
**Author:** ![Alan\_T](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwithataxia.org/alan_t/32/31_2.png) [@Alan\_T](https://forum.livingwithataxia.org/u/Alan_T)\ **Post date:** [December 8, 2017, 8:26pm UTC](https://forum.livingwithataxia.org/t/potential-first-in-class-therapy-for-spinocerebellar-ataxia/5831/58 "2017-12-08T20:26:59Z")
thank your for update. I am concerned about, treatment adherence please seek advice from your medical team. ---
**Author:** ![chuck](https://avatars.discourse-cdn.com/v4/letter/c/8e7dd6/32.png) [@chuck](https://forum.livingwithataxia.org/u/chuck)\ **Post date:** [December 31, 2017, 12:33am UTC](https://forum.livingwithataxia.org/t/potential-first-in-class-therapy-for-spinocerebellar-ataxia/5831/59 "2017-12-31T00:33:54Z")
I understand the trial for bhv-4157 has been extended for 48 weeks. Is anyone on the trial showing improvement? ---
**Author:** ![cynthiaf](https://avatars.discourse-cdn.com/v4/letter/c/f19dbf/32.png) [@cynthiaf](https://forum.livingwithataxia.org/u/cynthiaf)\ **Post date:** [January 1, 2018, 5:30pm UTC](https://forum.livingwithataxia.org/t/potential-first-in-class-therapy-for-spinocerebellar-ataxia/5831/60 "2018-01-01T17:30:33Z")
Hi Chuck. Yes my daughter is as mentioned above. We went to a wedding this week and danced and she was able to twirl around without loosing her balance. We are having our follow up appointment I believe this month. Her SARA score went down quit a bit. It was at two three months ago. She took on two college courses and said learning was a lot easier as well. Are you on it? [Previous page](https://forum.livingwithataxia.org/t/potential-first-in-class-therapy-for-spinocerebellar-ataxia/5831.md?page=2) [Next page](https://forum.livingwithataxia.org/t/potential-first-in-class-therapy-for-spinocerebellar-ataxia/5831.md?page=4)