Biohaven expect to publish the results of their trial early 2018 xB
miracle happens and we are waiting for god’s hand:slightly_smiling_face:
yes, we are all waiting. Research is ongoing xB
Good news for my daughter. The doctor says her speech and her accuracy with her hands and gait have improved. I thought her speech was better I just needed someone else to notice. Again my daughter has SCA8 and she is only 21 years old. I feel so happy and hopeful at this time. She still is very moody though. I don’t notice as many ticks either.
Cynthia, it’s so encouraging when an ‘outsider’ notices an improvement, when you’re so willing for it happen yourself.
Did your daughter seek any advice re ‘mood enhancers’ A really low dose could make her feel so different Although, thinking this through, she may not want to take anything at this time, that could possibly interact with trial results xB
That is great news! I am so glad she notices a mark improvement on her speech and especially her gait. I wouldn’t worry too much on her mood swings. Have you had a 21 year old? lol Now a days millenniums are all moody…
Dr Perlman suggested talking with someone first. She needs constant communication with the family. There are some other issues besides her illness that bothers her but nothing she has done. She needs to just concentrate on her well being. I gave her a pedicure today. I think little things to show we care will help.
So true Henry. They are very sensitive. She just needs to concentrate on herself and not worry about outside distractions. I have a 26 and 28 year old as well. We all love and support her.
How is your Daughter going with the trial? I hope she is showing signs of improvement.
I understand they have extended the trial for 48 weeks.
The BHV 4157 (trigriluzole) which was unsuccessfully tried for SCA is now being tried for Alzheimer’s Disease. 3 Days ago news.
Biohaven is doing an extended study with the BHV-4157 (Trigriluzole) for 12 more months. Even though, the drug did not show any improvement in symptoms of ataxia compared to placebo, the study show that it may have slowed the progression of the disease. I am skeptical about it.
I agree with you 100%. I finished up on this trial with nothing to gain from it!
Biohaven has shifted it’s focus to Alzheimer’s and OCD with BHV-4157 (Trigriluzole). The FDA sent a letter of approval to study more with BHV-4157 and it’s effect on Alzheimer’s and OCD on July 24th. I was invited to join the extended study with BHV-4157 on July 30th. saying that it might slow the ataxia progression.
It sounded too much of a coincidence. I understand that any research is important, even if it does not benefit my illness. So I agreed to join the extended study ONLY if Biohaven reimburses me for my travel and lodging, since I have to fly. I have not heard anything, so far.
Good move! Asking them to cover your expenses. I had to pull teeth to get them to cover partially my expenses to travel all the way into NY!
Just today, I learnt that Biohaven has agreed to reimburse for my travel and lodging expenses for a year. Even though I think BHV-4157 has not made any changes to my illness, I have agreed to join the expansion study, which will start from November. Even if it does not help me, hopefully, it will help somebody else.
I just received email from Johns Hopkins that Biohaven wants to extend their study for 1 more year.
What are your thoughts re that decision.
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.