Troriluzole. Trigriluzole

[Eunseo]

Hi I'm a south Korean who was diagnosed with SCA2, CAG38, 5yeasrs ago.

I have taken Tasigna, 300mg daily but i feel degeneration. But I think it is very slow.

I'm an English teacher in Korea.

I wonder if you have any info about troriluzole.

I think the medicine is the most hopeful.

I hope it can receive FDA approvement ASAP

P.S I wonder a person whose nickname is South_Korea.

I'm 지승연 and contact me.

[wobblybee]

🙂 Currently, around 18 medical centres in the US are seeking patients to enroll in the study for Troriluzole. This is US based only.

[Eunseo in reply to wobblybee]

Thanks

[sunvox]

Trigriluzole has had a human clinical trial.

Riluzole also has had a human clinical trial.

The drugs did not help most people.

You can find a discussion of some people who tried it on livingwithataxia.org livingwithataxia.org/t/bioh...

BioHaven is trying a longer study of people with less symptoms to try again.

Trigriluzole is designed to help symptoms only.

Trigriluzole does not slow the disease.

[Eunseo in reply to sunvox]

disappointed..but I'll wait. cause gene theraphy looks far away. it will take much time.

[vinupr]

Hello Eunseo.

My name is Vinu, I am from India. I have sca2. I have used this medicine for the last two tears, My doctor told me about this. But I don't feel any improvement in my condition. I think this drug can't help my condition.

[Eunseo in reply to vinupr]

Thanks. but I think the belief that no more degeneration would not happen is really important. I also have sca2. 2years is enough to recognize any degeneration. what do U think?

[ww-wibblywobbly in reply to Eunseo]

Hi, I have never tried this drug. But the advice of the last specialist I saw, was to believe that you won't get any worse than you are now. Really believe it. Positive thinking really can make a difference.

[Eunseo in reply to ww-wibblywobbly]

yeah, we have no choices but to wait for the drug.

progression is slow but absolutely happening.

[vinupr]

Dear Eunseo,

You said right. Belief is very important, but I have used this condition. I have no wife and children. my age is 33. I hope in future years are better. I know its a genetic problem.

[Eunseo in reply to vinupr]

So do you feel any degeneration??

[vinupr in reply to Eunseo]

Yes dear. Difficulty in walking and I have some balance problem, I felt more when we use steps to climb. Do you feel any difficulty. whats your condition.

[vinupr in reply to vinupr]

I need to discuss more about this problem, Can you send your email Id. My Id is [e-mail].

[vinupr]

I am living with my parents.

[Sunny8088]

can you send me email pls [e-mail]

[Eunseo in reply to Sunny8088]

me?

[Eunseo in reply to Sunny8088]

Okay. Thanks!

[Sunny8088 in reply to Eunseo]

Yes please

[Eunseo in reply to Sunny8088]

I sent!