Riluzole

[Tom1966]

Been give this to take anybody else had to take

[Mary C]

Hi Tom, that’s the usual medication prescribed for MND.I chose not to take it but I know others on here do take it.
Best wishes
Mary

[Tom1966]

May i ask why you dident sorry I don’t mean to pry but I took one and not feeling to well and the cure is worse then condition

[slp]

Hi Tom
it's the only drug available for treating MND at the moment. I have been taking it for 9 years

kind regards Sarah x

[Mary C]

My consultant told me he believed that I might get a few months longer life.I explained for me I would rather not if that was the case.At another appointment he pushed me to take it which I did for 3 months and they thought it’s my decision so advised him I won’t be taking it anymore .
I also thought it was giving me a dry mouth overnight but having ceased it the dry mouth continues.
As Sarah said she has been taking it for 9 years and others on the forum take it too.
Gets it’s your decision after you get the facts from your neurologist and do your own research.
Best wishes
Mary

[Ellie]

I've been taking for over 14yrs Tom and, as long as my liver tolerates it, I shall continue taking it. It did make me quite tired initially, but I got used to it.

Anyone on it needs regurlar LFTs (liver function test) but this is just a blood test.

Real world evidence shows that it adds more than the "3 months" shown by the trial data. If you can tolerate its potential side effects, and not everyone does, then it's usually a case of 'why not'? But nobody has to take Riluzole, nor should feel that they have to.

Love Ellie.

[Beemer]

I have been taking it since my diagnosis in Jan 2020. I was also told it may extend my life 3 to 5 months, but nobody knows for sure.
I have had no side affects.

[Lynne K]

I’ve been taking Riluzone for three and a half years with no side effects. I read something ages ago that it can extend life by nine to eighteen months. No way to prove this as we’re all different. Lynne

[matthew55]

I gave it up a while ago and things happen that happen. I just don't want extra time is all. 😀😉x

[richard]

I have also taken it for three years plus with no known side effects. With regard to the 3 months extra view my consultant said that was based on an 18 month life expectancy, which is 16%. So if you have slow progressive MND with a life expectancy of say 5 years then it can add another 10 months or so

Richard

[Olivia H]

Hi Tom
I took it for a few months, 9 years ago, but made me nauseous all the time so stopped it and decided not to take.
Olivia

[EvelynMW]

Great to read that some people have been taking Riluzole for years. I have a very slow progression, taken since late 2018, one finger folding up, to today, May 2021, to lose most function in my left (dominant) fingers and the left wrist, with my fingers on the right losing strength and dexterity.

I started taking Riluzole about 4 weeks ago and for several days have had side effects which stopped me being able to do much at all: slight dizziness when walking, feeleing slightly nauseous, some head aches and extreme lethargy. Today, i am hopeful they will soon abate. Mainly a headache and some fatigue.

The best side effect, which might, sadly, be fading, is not wanting to eat or drink anything sweet. As a lifelong Weight Watcher, this has certainly helped me!

Anyone on here with information about diet, and eating foods high in glutamate?

[Ellie]

EvelynMW You could try taking just 50mg Riluzole per day for a few weeks to let your body get used to it, then increasing to 100mg - you can then make an informed decision as to taking it or not.

Glutamate in food does not cross the blood-brain barrier. Some studies have shown that high carb and/or high fat diets can slow progression but of course, we're not immune from complications that can arise from such diets, especially if you are a slow progressor like you are.

[EvelynMW]

Thanks Ellie. Hmm, as a weight watcher not sure i would like to go back to a diet high in fast carbs or fat, whatever the potential benefits!

Where will i find your profile? Interested in the blue words but not sure i understand them, are they explained somewhere?

[Ellie]

Evelyn, click on my avatar, then click the 'About' tab to read my Bio. x