Would anybody who is participating in this study please let me know? I need to find out how long you have been in this study and if “you are getting cured’ or “it has been a big waste of time”. Thanks
I’m interested to know Henry, are you already prescribed Riluzole? And, if so, were you experiencing any benefit?xB
Yes Beryl_Park, I am on Riluzole or the main by-product of BHV-4157 officially for almost 10 weeks (8/15 will be 10 weeks). I have nothing to report - no improvements or side effects - nothing! That’s why I started a new thread trying to find anybody else who is on this trial. After much probing with technician, I asked her if she found any improvements with other participates and she said “some have experienced some improvements, even though they do not feel like it”. Some showed improvement on some tests. I do not believe it! The test they run are all subjective and even though it is conducted by the same person there is a margin of error. I personally do not believe that taking BHV-4157 cures or slows down the disease. I just started doing this trial (8/8) WITHOUT taking all my supplements. I am trying everything! I can only hope and pray…
As far as I can understand Henry, Trigriluzole is not designed to be a ‘cure’ but more a better tolerated form of Riluzole, less toxic to the liver. So, for whatever reason you were prescribed Riluzole, this formulation should be better for you, even though you aren’t able to perceive obvious changes.xB
I participated in the clinical trial at UCLA. The preliminary results of the study should be available in October. The FDA has “fast tracked” this medication and if it proves beneficial, it could be available by prescription early next year. This not a cure, but some patients have observed a reduction in symptoms. It takes 8 to 12 weeks to see results.
Can anyone explain to me what BHV 4157 is for. Does it slow progress and prolong
life? In what way does it help? Thank you
Hi Punk🙂 Google www.biohavenpharma.com and scroll down the home page. Click on ‘Glutamate Platform’. Heavy going but you can get the gist😉xB
Thanks jtadej, you didn’t mention how it worked for you. Anything noticeable? Did you notice any side effects like liver digressing?
Henry,
This new formulation of Riluzole, now called Trigriluzole, was developed to be much easier on the liver. I think I feel somewhat better; more stable, less choking and less double vision. They still haven’t told us if we were taking the real drug or the placebo so I’m not sure if I have a real effect or a placebo effect. All subjects are on the real drug now. Will know more when I see the neurologist September 1st. I will update my post then.
Jerry
JtadeJ, as noted above I finished 10 weeks and completed Extension Phase Visit 2 (Week 8). Will also update post after next visit (9/4).
Thanks Beryl, hope you are keeping well x
Hi Jerry. My daughter is doing the same trial at UCLA. What form is your SCA. My daughters is SCA8. It is hard to see drastic improvement but she isn’t ticking as much and her speech seems clearer. During the study the first 4 weeks she seemed better then the following 4 she seemed worse. She thinks she got the real Meds then the placebo if that’s possible. Any how she has been on the real deal for about 2 weeks. Maybe it takes some time since her progression is slow maybe to reverse it will be slow as well. Something to think about. I’m just glad there is a glimps of hope.
Hi Cynthia. I have SCA1, I was only diagnosed 3 years ago, so my symptoms are still mild. I thought I felt better, but I’m doing so many other things, diet, yoga, meditation, exercise… it’s hard to know which is helping. I started the real drug 3 weeks ago, Dr. Perlman says it can take 6 - 12 weeks to see improvements. I agree, there is always hope.
Up and down Punk. Best wishes to you and yours🙂xB
Hi. My daughter believes she is better I asked her about her tics and she said she has not had any. She is excercising as well. She has been able to do more activities with friends as well. She went to the beach which is 2 hours away and hang out all night with friends with no symptoms. She is very moody though. She will start up with college again this fall. I told her one step at a time. Add more activities if she feels she can handle them. Stress brings on the symptoms. We will see how school goes. Still hoping and praying. Good luck to you too. How old are you?
Cynthia, I’m glad your daughter is doing better. I’m also feeling more stable and have less double vision. Stress does make symptoms worse and depression and anger are constant struggles. My doctor prescribed a low dose of Prozac which seems to help. I also eat a very low carb, Ketogenic diet which has helped reduce my depression. Good luck to you and your daughter…
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Who do you see for depression. What type of doctor? My daughter needs to talk to someone even though she seems better. Thanks for your help.
Hello all, good thing I checked with office for my Sept. appointment and they are closed due to Labor Day. So I will update after my new appointment of Sept. 6
Hi Cynthia🙂 My Neurologist recommended I try an antidepressant,
he suggested Sertraline for me. I’ve only chosen to stop taking it
because of possible interaction with other recently introduced
medication. Personally, I found it helpful, it got me into a better place.
xB
Yes my daughter needs to talk to someone. She gets very frustrated when she is trying to get a point across and can’t quit do it with her words. She started College again. She wants to talk to someone through College but they are not medical doctors. I wonder if the doctor from UCLA can prescribe her meds. The one that is doing her medical trial. Just a thought.