Riluzole to Take or Not to take?

[k_g123]

I’m not certain whether to take or not, confused advise. I was diagnosed Dec 2020 - took 3m before prescribed - then Dr R says about all the side effects and put me off, so haven’t taken. Then Professor H says to take one a day see how I react, and Professor T says not all suffer side effects. So I’m not taking yet. Any experiences please that can help me decide take or not. for Evelyn

[Ellie]

Welcome to the forum Evelyn.

Take a look through these recent threads:

https://forum.mndassociation.org/forum/motor-neurone-disease-general-discussion/life-with-mnd/treatments-medication/47418-are-you-taking-riluzole

https://forum.mndassociation.org/forum/motor-neurone-disease-general-discussion/life-with-mnd/treatments-medication/50840-riluzole

https://forum.mndassociation.org/forum/motor-neurone-disease-general-discussion/life-with-mnd/treatments-medication/1429-riluzole-worth-taking

[Lynne K]

Welcome to forums Evelyn, I’ve been taking Riluzone for 42 months and had no side effects. If you don’t try it you won’t know if you’ll have side effects or not. But if you do take it make sure that it’s 2 hours after you’ve eaten or 1 hour before food. That’s so that it can be fully absorbed. Lynne x

[Boiler68]

Hi Evelyn

My husband has had MND 13 years. He's been taking rilozule all this time but in the last 8 months or so reduced his twice daily dose to just one. This was mainly because of the lockdowns and not wanting to go to the doctors to do the blood test for the liver safety. The only side effect for him was feeling a bit dizzy after taking it, but this wasn't all the time.

Boiler xx

[Beemer]

No side effects for me, planning what to do with the extra 3 to 5 months it gives me

[denise]

Think we've all been thinking this one through. It's difficult to tell. If everyone had a twin with exactly the same mnd and one took it and they other didn't we might have an idea.

[Suefromwakey]

Interesting Denise!............Beemer Albert has decided he doesn't want the extra 3 months so wont take it even if it ends up being ALS he'd rather do the DNR and not take tablets.

[richard]

I have been taking it for a few years now and with no side effects.

Richard

[k_g123]

Thank you all for posting your experiences. You have encouraged me to start taking and see if it has any affect, one a day at first. Thank you. Regards Evelyn

[BobFOwen]

I've been taking Riluzole for 7 months and I have not noticed any side effects, but I'm not sure it has halted progress of the disease.

[Ellie]

BobFOwen Much as we'd like it to, Riluzole won't "halt the progression of this disease", there is evidence that it extends survival, especially extending the time to needing breathing assistance. xx

[EvelynMW]

I am still taking riluzole at 1 a day - the side effects of 2 a day were horrendous. However, after we get home from this house window shopping, i will go back to trying 2 a day, and, assuming i am now acustomed (sorry, being able to use only 1 finger of my left hand means more errors - such that i get bored correcting them all) i will continue at 2 a day, and report back.

[Ellie]

I am still taking riluzole at 1 a day - the side effects of 2 a day were horrendous.

Any side effects on 1 Riluzole per day? xx

[EvelynMW]

1 riluzole a day, no side effets for me. Great! Back up to 2 next Monday or Tuesday so that ive no outings planned for a few days after! will report back.next week, if side effects, or later if not.

the 'extends life for 3 to 5 months' is not the reason i am taking it. i sort of assume that time is based on sufferers that are in a significantly worse state than me, ie close to to death. i am trusting that it will slow progression and will keep me living for much longer. can only try

[Onein300]

1 riluzole a day, no side effets for me. Great! Back up to 2 next Monday or Tuesday so that ive no outings planned for a few days after! will report back.next week, if side effects, or later if not.

the 'extends life for 3 to 5 months' is not the reason i am taking it. i sort of assume that time is based on sufferers that are in a significantly worse state than me, ie close to to death. i am trusting that it will slow progression and will keep me living for much longer. can only try

Correct. The 2/3 months is the statistical model built on the 18 month trials 25 years ago. As a result it was limited effectively to the timeframe within those trials.

The same mathematical sample, but extrapolated and with further research on modes of action now shows that a better way of describing the effectiveness is about:

10% extra lifetime over the progression.

So if you were to survive 5 years it probably equates to 6 months, 10 years 1 year etc.

We also don’t know the ‘personalised effect’. It could be far more in some. The key facts are that it is safe (unless liver and or other effect which shows up early) and it is the only drug shown long term to have an effect, even now.

Lee