Riluzole and Ataxia

[Mneutz]

Hi Ataxia Friends

I recently saw my neurologist and he suggested trying Riluzole, a drug in trial for ALS- Lou Gehrig disease. I have SCA6. Has anyone tried this for ataxia?

Thanks Tina

[Litty]

No sorry - but has it helped? x

[Mneutz in reply to Litty]

I have not started it yet. When I do I will post an update. thanks

[Libra7]

I also have SCA6 so will be really interested to hear whether you get any benefit from Riluzole.

[Mneutz in reply to Libra7]

I will post results. I’m not starting until May

I have it from maternal side. Many family members have it. I need to get confirmed DNA blood test to start med. it takes 6-8 weeks for result.

[Sunny8088]

There is clinical study of modified version of this "bioheaven trigriluzole "

[sonofapeter]

I have, roughly about 1 1/2 years ago. Seemed to work wonders at first, but then it didn't do crap. Probably more of a placebo effect. That shouldn't stop you from trying it though as all of us seem to have different reactions to certain medications. I have SCA 3.

Best of luck to you.

[Mneutz in reply to sonofapeter]

Thank you

[Mneutz in reply to Mneutz]

Did you experience any side effects?

Did you restrict alcohol and caffeine while on it?

Thanks

[hsilverman1]

HRS

I am trying it right now. I am not sure 🤔 if it is helping. I have SCA 6 also and live in Vegas, Nevada. I will let you have as I proceed.

Have a good weekend.

[Mneutz in reply to hsilverman1]

Hi hsilverman1, I am checking in to see if you are liking the drug Riluzole?

Thanks Mneutz

[Mneutz]

Thank you. Hope you have good results. If you don’t mind me asking how old are you and do you use an assistive walking aid? I’m 52years old. Just started using a walker. I can furniture walk a little at home.

Thanks Martina

[hsilverman1 in reply to Mneutz]

Dear Martina,

The Riluzole is helping my balance a little. I am not falling as much, and seem to be able to catch myself easily.

I use a cane with a quad attachment I got on Amazon. Actually I have 4 canes and 2 walking sticks. Then I have a U-Walker which is designed not to tip over for Ataxians.

I also walk with the furniture but I had hand rails installed in our house. We redid the bathroom to include grab bars in the shower and tub and a seat 💺 in the shower.

I hope this helps.

Have a great week.

Howard Silverman

[Mneutz in reply to hsilverman1]

Sounds promising. Thank you. Do you mind if I ask your age? In my family members start needing a walker around 52 yrs.

thanks Tina