ANYONE HAVE ANY EXPERIENCE with this drug. My Neuro prescribed it today. From what I’m reading they will prolly deny me. It’s used for ALS but some success with ataxia

Didnt get denied. Been taking a week now. Will update you

I asked my neuro about this she was very negative and tried to put me off, Said that I would have to have regular blood tests and checks. Anyway I didn’t get it but look forward to hearing how you get on. The best of luck.

Riluzole (Rilutek) is prescribed to help with Imbalance and Incoordination.

I am willing to tri anything I quit drinking alcohol and quit caffeine, so far been a week little response but maybe little. Still see. Thanks for the reply

My Dr. prescribe Riluzole about 8 months ago.Have been taking it 2x/day. It is for ALS, thought it was supposed to help with cognitive function. I have CA, major incoordination and imbalance. Best of luck to you. I haven’t noticed any bad side effects.

Has it helped at all?’ What’s your age?

  1. I haven’t noticed any improvement, but I started treatment very, very late in the game. So it might be too late for any improvement.
    Probably it’s worth trying bc it might help and no bad side effects.Best of luck to you!

MY neuro mentioned it but I have an appt. with MA Eye &Ear first,it should not be denied though. p.s. prolly is not a word you mean probably.

Thank you English teacher

Or should I say THANX.

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Lin-da I have been reading non stop about the effects of RIZULOLE ON SCA3 and finally found a study on mice. However not positive . I have sent it to my neurologist. Here is the link.

The article is hard to follow but thanks. Do you take Riluzole? What is your experience?

I am taking it , but the article basically says they tried it on mice with no luck and it is cautioned to use on humans. Tonight is 2 weeks and I had a dizzy spell and blurred vision real bad for 30 minutes and my DR told me to stop. Anyway we will see what happens tomorrow going for blood work. That article toward the bottom says rizulole actually does damage . long term and its the most recent article Ive found. We cant leave it up to DRs to keep up with testing so I am researching all the time.

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Wow. Thanks. Are you going to stop taking it? I have CA not SCA but maybe the warnings for Riluzole are the same for both.

Yes I have stopped. Dr told me to.

I have also been advised Riluzole 50. to start with 1 tablet per day. It seems, it might have an effect on the liver. I have been advised lipid profile test after 10 days of taking the medicine. I am a bit sceptical to start the medication. I am 44 years old and have been diagnosed with SCA3.

:slightly_smiling_face: Hi, Welcome. Yes Riluzole is said to have the potential to adversely effect a person’s liver but regular monitoring should flag up any problem. Let us know if you’ll continue to take Riluzole, and what benefit it gives you.

I am on my second bottle, and see no improvement!

Hi, and Welcome sk1usa :slightly_smiling_face: It has to be said that there have been varying responses to Riluzole, not everybody has good results. Some people here are involved with the current trial for Troriluzole , responses to that have been varied too.