Riluzole

[Doggymama]

My husband has just started taking riluzole and he is feeling terribly nauseous with a pounding headache, has anyone else had this after starting it? X

[Ellie]

Oh Alison, he's unfortunate to get the double whammy

Nausea is a 'very common' side effect of Riluzole, headache is a 'common' side effect.

I had nausea and fatigue at first but thankfully both lessened, then went, after a few weeks - my nausea was only mild though, so was bearable.

If he is taking 2 per day, he could try just taking it once per day, maybe with some dry crackers, and see if that makes a difference.

If the side effects prove too onerous, even though it will be disappointing, he can stop taking it - it is *not* a wonder drug by any means and day-to-day quality of life should trump all. xx

[Doggymama]

Thanks Ellie, I think he wants to stop taking it, can’t have him feeling like this on top of everything else, xx

[Jane]

I had similar problems with Riluzole. Was absolutely fine for the first two weeks, then gradually felt more and more nauseous over the next four weeks, along with extreme tiredness and generally feeling grotty. I had been feeling really fit and well before starting Riluzole, so decided it wasn't for me. Within three days of stopping the Riluzole, I felt back to normal again.

[shelly21]

Maybe reduce to one a day. Keep a pain log. I've suffered very bad head pain re another neurological problem. Dihydrocodiene was my go to drug for pain.

I recall you saying re his bad headache and maybe they need to find a good pain relief as pain really can cause us to be so miserable xx

[Tabbycat]

Doggymama my experience of taking Riluzole was exactly as described by Jane.
I tried on 2 separate occasions just to be sure but it was the same both times. I was so nauseous I didnt want to eat and was very lethargic.
I stopped as it was effecting my quality of life.

[Doggymama]

Thank you so much for the replies. Will see if he will take one a day and see how he is xx

[EvelynMW]

Same for me, went back to 1 a day, then bak to 2, no issues now

[Marc from London]

Just reading this tread. I personally don’t take any Riluzole. Read somewhere it only improves life expectancy by 1-3 month. not sure that’s worth it. But anyways that’s just my opinion. Hope I am wrong for you all.

[shelly21]

They haven't been able to test the effectiveness of riluzole but they believe it delays the time of the need for niv.

[JamesW]

Just reading this tread. I personally don’t take any Riluzole. Read somewhere it only improves life expectancy by 1-3 month. not sure that’s worth it. But anyways that’s just my opinion. Hope I am wrong for you all.

My Neuro said it was at least 10%. If you are slow progressing that makes it very much worth it in my book 👍

[Ellie]

Read somewhere it only improves life expectancy by 1-3 month.

That was the finding from the clinical trial - clinical trials are for a defined (short enough) period and are not representative of the 'what happened after'.

Real World Evidence on Riluzole shows it improves life expectancy for significantly longer. xx

[Doggymama]

Unfortunately side effects just too bad for my husband, has had to stop taking it. xx

[Arcadian]

Had my MND regional MDT Clinic appointment last week, Neurologist suggested Riluzole and would correspond with my GP regarding prescription - a week later a bag of Riluzole packets drops on the house doorstep through the post...
I presume the hospital has sent them, as my NHS app prescriptions still only lists pre-existing non-MND meds and local chemist collection.

Will see how I go with any side effects...

[Aidan in Shrewsbury]

Started takin it a few months ago. Had no side effects whatsoever but found it seemed to have no effect on slowing the progress of the MND so stopped taking it.
have read somewhere that it is not that much better than a placebo.