Riluzole & Friedrech's Ataxia: Hi, I saw a new... - Ataxia UK

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Riluzole & Friedrech's Ataxia

Tiggywinkles
Tiggywinkles

Hi,

I saw a new consultant yesterday as my previous one had retired (no loss as he was no good!) and he mentioned the drug Riluzole to me. He said it has been used for Motor Neurone Disease but that it may help with FA too. Has anyone else heard of it or been prescribed it?

16 Replies
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😊 I recall seeing articles about this. If you google Riluzole and Friedreichs Ataxia several links are shown.

😊xB

SueMillman
SueMillmanAdministrator

Hi Yes, it is approved for ALS and MND. There are several studies which have been done in the UK regarding Riluzole and cerebellar ataxia: clinicaltrials.gov/ct2/show... and clinicaltrials.gov/ct2/show...

Here's an article from The Lancet relating to FA: thelancet.com/pdfs/journals...

I have a sneaking feeling that further work isn't being taken forward on it and that there's a reason why... But I'll get one of our Research Department to respond to you on Tuesday with a proper answer!

Best wishes, Sue

Thanks for your reply Sue. I will look forward to seeing what the research department find out. My consultant did say if I wanted to try it he would be happy to prescribe it so I am looking into it before deciding.

JP66
JP66 in reply to Tiggywinkles

Riluzole or Rilutek by it's brand name has been around for some time.

webmd.com/drugs/2/drug-1214...

As Sue linked above you can see that it has been tested in multiple clinical trials for patients with ataxia. It has also been studied in patients with ALS, MS Parkinson's and other neurodegenerative disorders. Unfortunately it has had mixed results. There was even one study done in mice that suggested a possible negative impact:

onlinelibrary.wiley.com/doi....

In people with ataxia some patients did report improvement, but others did not, and still others felt it made them worse. There is a newer version that works in the same manner called BHV-4157 that is undergoing a clinical trial in the U.S. right now.

clinicaltrials.gov/ct2/show...

Here are quotes from patients with ataxia that tried Rilutek/Riluzole and posted on other forums:

Oldtimer, you have a memory like an elephant! No "oldtimer's disease" for you. How kind of you to remember me! Unfortunately, after trying riluzole for over a month, I didn't find that it relieved any of my Ataxia symptoms. I know of another patient who reported improved mobility and speech. . . . ---SE

Hi Sara, I have ataxia 3. Years ago I could not close my eyes without falling backwards. About 5 years ago, I started to loose my balance. About 3 years I was genetic tested positive. The loss of balance was progressing at a slow pace. I decided to retire from teaching at 63. I went to Mass General to see my neuro and have had Physical therapy 2 times a year, which it helps.I don't have tremors, but my sister has. I go see the neuro 2 a year.The time before the last time that I saw him the testing that he performed on me indicated that I was a little worse. He gave me rilutek and 6 months later I perfomed 30% better. He was really surprized, but told me that he doesn't know how long the positive results will last. I improved my balance and walking and other areas such as close your eyes without falling backwords, finger to nose movements. I use a walker during the night and to go to the mall. Most stores have carts. I walked unassisted at home before I used riluzole, although I usually take my husbands arm or a friend's when I go out. If I am really tired I use the walker at home. I have been taking riluzole maybe for six months. I hope I answered all your questions. What kind of ataxia do you have? I hope that everything works for you. Email me again when you can Lorena

I used riluzole for 7.5 weeks without an improvement for me. I have MSA-c. I had to stop because of extreme tireness. Dober

Tiggywinkles
Tiggywinkles in reply to JP66

Thanks for the info - although the results have been variable with different people. Saying that, I know from personal experience that Gabapentin had very negative results but others find it a great help, so this may be the same. I shall think more before making any decision.

Take Riluzole and then leave out coffee and alcohol. Riluzole works by decreasing your body's levels of glutamate, an amino acid that affects nerves that send messages from your brain to your muscles. Kinda don't really want this. Read the Blog and then see your Doctor

Tiggywinkles
Tiggywinkles in reply to Driven1

Thanks for your reply. The coffee is no problem as I don't like it but alcohol would be a pain. I am not a huge drinker but do like a glass of Prosecco from time to time.

I have to balance my ataxia with actually enjoying life as well.

SueMillman
SueMillmanAdministrator

Hi Tiggywinkles, I've spoken to the Research Department. They said that the researchers recognise there may be some potential in Riluzole for ataxia but the research to date has been inconclusive. There are a few rumours regarding people applying for funds to do more work on it, but nothing confirmed as yet.

I sent you the links to the research projects that have been done. Here are links to the results of these projects (both done by the same team). ncbi.nlm.nih.gov/pubmed/263...

ncbi.nlm.nih.gov/pubmed/202...

Your doctor is allowed to proscribe you Riluzole, but we haven't heard of anyone doing so before. We would be really interested to know whether he goes ahead, and what effect it has on you if you take it. Likewise we would be interested to hear from anyone else with ataxia who has had it proscribed. Best wishes, Sue

Thanks for the information from the research department. I shall have a chat with my GP once she has had the letter from the consultant I saw last week to see what she thinks. I am keen to try any treatment that may help or improve my FA but want to be sure before starting on it that it won't have any adverse impact on other drugs I already take. (I am on Epilim for epilepsy which has been under control for many years.) If I do start taking it I will let you know how I get on.

Hi Tiggywinkless

Did you try the riluzole? My 14 year old son has fa and I am going to ask his neurologist to start him on it

No, I didn't. My GP couldn't find any information about it being used for FA so I didn't go any further with it. Let me know if your son does start to take it and has any improvements in his condition.

I will do

Take care

Hi Tiggywinkles, Hope you are fine, i use that drug for one year but i can't find any progress. Do you heard about stem cell theraphy.

Tiggywinkles
Tiggywinkles in reply to vinupr

Thanks for your reply, I didn't go any further with it in the end. I am currently taking part in a pilot study at Bristol using G-CSF to increase my own stem cells, this is for Friedreich's Ataxia, it is a very small study but may become a larger one if it proves to be successful/

Mneutz
Mneutz in reply to Tiggywinkles

Hi tiggywinkles, did you get improvement with the Bristol study to increase your stem cells?

Thanks Tina

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