Riluzole

[PaulaF]

This is my personal view from looking at data in trials.
No one is completely sure of the mechanism by which Riluzole is effective and it does not appear to demonstrate functional benefit in respect of MND symptoms, but it does appear to prolong lifespan for certain categories of people.
Its clearest effect seems to be in alleviating weight loss and Fang's study identified MND patients with significant weight loss as those who seemed to noticeably benefit from it. I suspect its main effect might be in stimulating nutritional absorption?

[TinyLady]

I was told I couldn't take Riluzole as my MND is atypical so there is no evidence the side effects wouldn't outweigh any benefits. I'd have liked the choice though.

[Zante]

Ellie thanks. I will raise it again at my next mnd clinic . I think my gp would be reluctant to start something without it being initiated by consultant. I worry after reading some people with the side effects cos medication tends to knock me sideways! X

[Ellie]

I don't know how this works but if a medication isn't licensed for a disorder can it still be prescribed or would it cause difficulties for the consultant?

Yes, Riluzole can easily be prescribed for all MNDs, and plenty of people on this forum with non-ALS MNDs are prescribed it.

[Zante]

Ellie that's good information thanks. my consultant brought up the medication riluzole and then shot it down specifically with regards to pls. But that description above makes me wonder if it would help me. I was also told that the tizanidine would be more beneficial and because of other medication I am on she felt the tizanidine would be of more benefit than riluzole. I don't know how this works but if a medication isn't licensed for a disorder can it still be prescribed or would it cause difficulties for the consultant? Xx

[Ellie]

I got the impression from my consultant that she didn't go much on it at all and neither did the professor I saw.

You might find this helpful:

How does Riluzole work for motor neurone disease?

These electrical messages are transmitted from one motor neuron to the next via the release of a chemical messenger. For many motor neurons this chemical messenger is a chemical called glutamate, but high concentrations of glutamate are toxic. Riluzole is thought to work by suppressing glutamate activity.

So, it doesn’t matter if the motor neurons originate in the brain (UMNs) or the spinal cord (LMNs).

The clinical trials for Riluzole were in people with ALS only, which is why its license is for ALS only. IMHO, it should routinely offered to those with PLS & PMA too. xx

[Zante]

Jen70400 am really glad to read that you also have slow progression. I think she was meaning for pls its not worthwhile due to riluzole having more impact with als. I think 30% slow down would be incredible impact on prognosis.

[Jen70400]

Professor Al- Chalabi said at the MNDA ( I think it was 2020) riluzole slows ALS progression ( he did not discuss PLS) by 30 %. It was recorded and I relistened twice to be sure I had not misheard. I then asked at my own clinic and the doctor said yes that is what we know now. I take it and have very slow progression. I don’t know how much is due to Riluzole but my neurologist believes it helps

[Zante]

JamesW it's weird how they are all so different thinking. She said to me the negligible difference wouldn't be worth the side effects.... I might not have had any side effects but do tend to with most medication. I got the impression from my consultant that she didn't go much on it at all and neither did the professor I saw. How can riluzole be assessed I wonder when everyone's progression is so different. But personally I feel if there is a chance something will slow it down its worth trying. I am trying to get antioxidants in for that reason and vitamin b12 and vitamin e! Never taken supplements before now. X

[JamesW]

My consultant was extremely positive about it and said it should give me at least another 10% life expectancy.

[Zante]

My consultant said to me that it makes a negligible difference and with pls its not any benefit to me as the little difference it makes is on the lower motor neuron impact eg atrophy. I didn't know that and she said she didn't think I would have any benefit from it so we decided not to use it.

[Arcadian]

...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.

Politely querying outside of a double blind trial and with a heterogeneous illness like MND - how would you tell?

For an unrelated incurable illness I also take a stabilising medication. I have no way of knowing personally if I would be worse without it, but I'm statistically healthier than average for that condition after 15 years of that medication and avoided (expected) intervention surgery.

I'm of the opinion (from research notes and neurology publications), by the time physical symptoms present with MND, a catastrophic percentage of motor neurons have failed. Anything that prolongs the function of the neurons, or inhibits their failing, is arguably beneficial (balanced against side effects and functional time extended).

[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.

[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...

[Doggymama]

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