I hear you. Biohaven is trying to look at the data and make their investment worthwhile.
My wife has a question for you,
- While you were on this test pill were you in any pain in your body?
she has pain in her stomach area and it is hard to find any medicine that she can take to take care of it. She was wondering if it is cause by this test pill.
I doubt that the BHV-4157 is responsible for any stomach pains. But I would let the investigator team know immediately. There has not been any reports that it causes any stomach pains and this is the second time I had been on it without any adverse effect.
Now do you feel any degeneration?
I don’t understand what you mean by, " if I feel any degeneration". There is natural progression of the disease, but I don’t feel any side effects from BHV-4157. I did not have any follow up MRI to see if there’s any further shrinkage of the cerebellum.
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You have progression. I’m sad.
There is nothing that halts the progression. Statistical manipulation by Biohaven is not surprising to show there is slowing only of the progression. But that’s a start. Expanded Analysis from SCA Clinical Trial BHV4157 (2).pdf (147.3 KB)
I am going to Johns Hopkins tomorrow to see the neurologist on Monday. This would be the end of 2nd. year I am on BHV-4157 The Biohaven expanded their study one more year to show that BHV-4157 slows down the progression of the disease. Although, I have not seen any change, I accepted the study for one more year. I will keep you informed.
Please keep me inform on this
Saw the neurologist at Johns Hopkins yesterday, Rolled into the BHV-4157 for one more year of expansion study. My neurologist seems to think that the next thing on clinical trial would be Antisense Oligonucleotide (ASO) for humans. So far, they have promising results on mice. She was not optimistic about CRISPR in the next few years,but had good things to say about Transcranial Magnetic Stimulation (TMS) of the cerebellum. We will see.
There is a man here in Scottsdale AZ that went to Calif. for the test and was given the real pill and he said that it work for him. he woke up one morning and he could walk better without a walker his speech was better he said that his whole body was better.
keep me inform what happen with you.
If you read the literature, there was no improvement with BHV-4157 in SCA . Only statistical analysis shows slowing of progression. I did not have any improvements.
I am going by what he said to me. I guess we have to wait and see
This is what he told me"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
I am not doubting the improvements you friend in AZ had… I wish BHV-4157 (Trigriluzole) showed inhibiting glutamate was the answer.
I understand what you are saying but everything that I have read and have come across states that the inhibiting of glutamate was the problem with SCA 3 people. Ever since we have found out about this I have did research on SCA3 and it’s problem and this medicine (Trigriluzole) is the only thing that has given us any hope for a normal life.
Biohaven is considering extending the study for 1 more year beyond 2020
that is good more they study about this the better they understand the disease
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I am on troriluzole trial right now- oct 2020 for 2 years. The first year is double blind study, so I might be getting placebo. The second year is a open study- I’ll be getting the medicine.
I have hereditary SCA 2 and definitely can use some help from medicine!