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Ataxia Support

Third test of bhv-4157

My wife is in her second week of taking BHV-4157 (third test here at Barrows neurologist instit) and she ask me to ask the group have they heard of any result from taking this “TEST DRUG”? She is wondering is it really worth it in taking the drug. She was wanting the drug to kick in and make her feel better. If there is anyone that has any information please let me know about it.

:thinking: Just wondering…Has she actually been told whether it’s the drug itself, or the placebo she’s been given…

They haven’t told her either way because they don’t know is what we were told.

H🤔 So, it could be 140mg placebo…At the moment, it seems as though there aren’t that many people involved in the trial who actually go online to comment about it. This may change when so many centres are now looking for volunteers. I have seen comments on Facebook support groups, but since nobody knows whether it’s actually Troriluzole, or the placebo they are taking…it’s hard to say whether there’s any real benefit. One thing’s for certain, sadly this is not by any means a cure…but SARA scores may change for the better. (Scale for assessment and scale rating of ataxia).

I have read comments that it takes 6-12 weeks for it to show any improvement. but we shall see what happens. We understand it not a cure but a treatment for the sca3 that she has . If they can have a treatment for it they can find a cure for it.

I was in the very first trial over two years ago. It took 8 - 10 weeks before I felt a positive effect. I was lucky and received the real drug not a placebo for the first 8 weeks… Hang in there, it does really work for SCA 1 and 3 patients.

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Jtadej;
thanks for your info. my wife has some question for you,

  1. What was you main problem you had before you got better? what SCA did you have? My wife has SCA3
  2. how did you know you were taking the real drug?
  3. My wife sleep alot did you have this problem also?
  4. How long have you had this disease?

SCA1 runs very strong through my mom’s family… first symptoms 10 years ago, stumbling, speech problems… confirmed genetic diagnosis 6 years ago at Mayo Clinic in Scottsdale, AZ. 10 weeks into the drug trial, I woke up one day feeling better, I could walk better and speech is okay. I’m 61 now, retired and live a fairly normal life. I enjoy afternoon naps, but I don’t sleep all the time.

Three years later, they haven’t officially told anyone what drugs the patients were on the first 8 weeks… I just know from all I’ve read, 8-12 weeks to feel anything. Good luck, there is no magic pill yet, but Biohaven is the first company to try.

Jerry Tadej

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Thank you Jerry for your info. We are in Mesa , AZ and have been fighting this for ten years. I think we have seen every Neug. here in the east valley and all they want to do is push pills on her. This is the first that we have come across a Place (Barrows Neug. Instit) that offer some type of hope. At least a treatment for it.

  1. Is there some way to tell from the bottle of pill that they have given her that she is taking the real pill?

No, the doctors don’t even know. I’ve been doing my trial at UCLA, Dr. Perlman is on of the leading Ataxia doctors in the world.

Jerry Tadej

Her Dr. is Dr. Fife at Barrows Neurological Instit. his specialty is Ataxia here in Phoenix. But we are thankful that we found someone that understand what she is going thru. My wife is Korean and her mother died of this disease in Korea. I am thankful that you took time to answer our question also.

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How did you find out you were taking the real pill?

Hi longbow06, I started taking BHV-4157 from June 13, 2017- May 8, 2018 which is about 50 days of the stuff. Unfortunately it didn’t work for me. It was a big waste of 50 days for me. Since that fiasco, I was able to have my sister tested for SCA2, she is also experiencing symptoms, and proved to be NEGATIVE for SCA2 - twice! They (Cornell) found we have Niemann Pick (NPC1) in common so I am guessing the clinical trial was not for me.Good news for you, I ran into someone at the clinical trial at Columbia who said it improved her situation. She was in worst shape than I was so who knows? Good luck and I hope it is the answers to your prayers.

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thanks for your input

Do you mean you’re not SCA patient?

Still waiting to discuss issue with Gene Counselor about reports…

I’ve got a question for you Beryl. This clinical trial was supposed to conclude by 1/19. At first it was given Orphan Status back in 2017. What is going on here! I’ve got SCA, so does my son and daughter. I keep telling them about this trial but keeps on getting pushed back!

Hey Thom this is longbow06 My wife is in the trail right now in her first month of it soon to be her second month of it. Right now she feel no different but what I have been told it takes 6 to 12 weeks for the drug to take effect. here is the web site that I use to track the test site on who was doing the test;

I hope that it help you.

:thinking: First there was Riluzole, then Trigriluzole and now Troriluzole. Riluzole was thought to have an impact on the Liver, so it was ‘refined’ and trials began for Trigriluzole. This was further ‘refined’ into Troriluzole and trials began in March 2019, to be concluded in 2020.

I am on BHV-4157 (Trigriluzole) 140mg a day for the second time. It started in January 2019 for 1 year. The increased dose (200mg. a day) started in March 2019. It does not reverse the symptoms but the data shows it might help to slow down the progression. I don’t have early information on the increased dosage of BHV-4157 . But they checked for my liver functions. So far they are OK. The results of BHV-4157 is not what was expected. But Biohaven might still go ahead with the approval from FDA after the studies are complete.