Hi Alan😊
Can you tell me, what is the difference between Trigriluzole, and Riluzole🤔 xB
Hi cynthiafinnell,
That is GREAT! The pill must effect different people in different ways. Almost 2 weeks NOTHING for me!
Hi The difference is the tri does not get metabolize by the liver therefore 100 percent gets to the brain where the other gets metabolized by the liver. Not good for the liver.
Thank you. I’ve been on medications that can cause liver problems:smirk:xB
Hi. How are you doing on the medication?
Hi Cynthiafinnell,
This Tuesday (August 1) marks 2 months on BHV-4157 and have noticed nothing. There has not been any side effect (thank goodness) but only my condition has gotten worse. I believe its not from the pill but the natural degradation of the disease. I can hardly “walk” and have to rely on my wife’s holding my hand to get around. I am considering stopping this trial because of the waste of time. Who knows if I was on this pill in the beginning? Every person is different and hope your daughter sees an improvement. I mean, it is on a fast-track!
Thank you, for your insight
Alan
Wales rare disease “warrior”
Thanks Alan, I just sent an email to my study Doctor that I wanted to know if I was on Placebo or BHV-4157 in phase 1 & 2 because it’s been 4 months on this study and NOTHING! It is becoming very difficult to go into NY and finding that all of this is becoming a big waste of time. I’m pretty sure he will tell me that the sponsor will not release such information but hey why not try?
Cynthiafinnel - how is your daughter doing? Do you know anybody else who is on this trial? Would love to know if they are seeing any improvements.
Hi. She is on BHV 4157 starting this week. We don’t know if she was on placebo or real pill. She seems to be improving but not sure if it is psychological. What type of sca do you have. Brooke’s is 8.
I am SCA2. Tuesday 8/8 will finish up phase 3 and will let everyone know how it goes.
Hello everybody, Well, I just came back from my Extension Phase Visit 2 (Week 8) from Columbia University and there is nothing new to report. I decided to continue with trial only by eliminating ALL my supplements from diet and will follow up then.
will post a new thread = Placebo
As I understand it, Trigriluzole is a ‘finely tuned’ form of Riluzole and is less harmful to the liver when absorbed.
The drug has a few known uses. In the case of Cerebellar Ataxia it’s thought to prevent further damage to certain brain cells (motor neurons) responsible for controlling muscle function.
Final results of the trial are said to be available early 2018.
xB
1 Like
Hi everyone. The second part of this trial for bhv-4157 is over and the FDA did not see enough evidence to approve it. However the 3rd part continues until the end of 2018. My daughter has had significant improvements. They did a test on her called a SARA test. Her score was at an 11. Her score went down to a 2. She still continues to tic when she is exhausted. She says learning seems to be easier as well. Her speech is much clearer. The doctors all agreed that the 8 week blinded placebo test was not long enough. My daughter continues with this medicine and will through 2018. I will post new findings.
2 Likes
Trigriluzole (BHV-4157) is a prodrug of Riluzole. I know that this form isn’t utilized by the liver as much and more drug is introduced to the brain. I know Riluzole has been around for a while and hopefully Trugriluzole will help many Ataxic patients. I know it is helping my daughter and I hope it will get approved in 2018. 
1 Like
Hi Cinthia if the trial failed then why is your daughter still on the drug?
Is there still hope for this and ataxia?
I do hope so
Hi. The trial is in the 3rd phase. They will have us on trial until late 2018. I was hoping the 2nd part of the trial would of given us the go ahead but all of the physicians agreed that 8 weeks is not long enough. So there is still hope. My daughter is improving and her name came up during a talk between all of the physicians on this trial. I don’t know why some people show improvement and why some people may not. She has sca8, young, and female. Maybe these factors have to be taken into consideration. So much to study but at least there is a study.
I want nothing more than for every ataxia patient to find a cure, but the fact is this drug is like levedopa in PD. It is a treatment for symptoms. Please, please, please talk to your doctor about some of the other molecules I have linked to in my posts.
Hi Andy. We are seeing one of the top doctors in the nation studying Ataxia. My daughter is very fortunate. There are only a few Ataxia clinics in the United States The top doctors around the nation are excited about this study. For now there is not a cure but this medicine may be blocking the progression. This is not covering the symptoms but stopping the progression and hopefully letting my daughters brain heal. In the future they may find a way to stop the replication process with DNA manipulation but for now my daughter is improving and I thank the Lord for this miracle and I hope it will help others. 
1 Like