I wish you could find your deseade AQAP. and sorry to hear that it didn’t work.
need to spell ck your typing,
- ASAP NOT AQAP
- DISEASE NOT DESEAD
Hello, I keep talking with your wife. Hope to hear good news
we are counting down to 8-12 weeks this is her third week
My wife is on her third week of this test pill BHV-4157 and she wants to know has anyone experience any change in their body after three weeks of taking the test pill? She think that she should be feeling some changing in her body by now or does she have to wait the 6 - 12 weeks before feeling any changes? Any info would be helpful.
she does not understand why she feel like she is getting worse. She said that her eyes sight and legs are getting worse than before.
For type 3, double vision is severe. Type 7 is likely to suffer from blind and symptom is various depending on types. I also hope you’re wife gets better.
SCA3/Machedo Joseph Disease has specific symptoms, if she is being seen weekly any change symptoms will likely be monitored. But if she isn’t, it could be worthwhile contacting the hospital for advice.
thank y’all for your comments. But what she is after is anyone experiencing condition getting worse while on this test drug
we do to thank you for your help
I am on BHV-4157 But I have not experienced any significant deterioration. But normal progression of the disease is expected.
My wife would like to know how long you have been taking the test drug BHV-4157.
I took BHV-4157 for 1 year in 2017 -2018 ( doubled blinded study, with probably 3 months of placebo) and started the second study( without any placebo) in the end of January 2019. My neurologist thinks my SARA score hasn’t changed much during the study.
So…just so I understand you correctly Shoaib. In phase 2, you weren’t given the placebo because of improved SARA scores at the time. But overall, scores haven’t improved
There was no improvement or deterioration of my SARA score during the first study in 2017 - 2018. The second study ( which I am enrolled in ) started in January 2019 with the same dose ( 140 mg.) to show if it slows down the progression of the disease. There was an option to increase the dose of BHV-4157 only if the SARA score dropped during the study. Fortunately, my SARA score has not changed since the beginning of the study. The third study began in March 2019 ( which i am not a part of) with increased dosage ( 200 mg.) of BHV-4157 . Some members on this board have reported a dramatic improvement of SARA scores with increased dosage of BHV-4157. But unfortunately, they are false. My neurologist thinks that Biohaven will apply for FDA approval of BHV-4157 for slowing the progression, after all is said and done. Although I am not too excited about BHV-4157 , I have a feeling that the FDA application will light up a fire for other companies to get into the race. We will just have to wait and see.
Thank you Shoaib. From what I’ve read elsewhere, there seems to have been a lot of faith placed on this study. Time will tell…
Shoaib, can you enlarge on ‘false’.
Sure. No data so far has come out on that study. To claim that the SARA score has come down from 12 to 1 is misleading.
I heard their representative explain the findings of clinical trial at the Ataxia conference last year.in Philadelphia. It was all smoking mirrors with their data proving there wasn’t a decrease with progression of the disease using BHV-4157.
but we have no choices,. T_T