Riluzole

[Hope]

When I was diagnosed back in November, I said I wanted to think about whether to take Riluzole. I said I did not want anything that would prolong my life with this dreadful disease and that 'maybe' 3 months more really wasn't worthwhile. I was told that some people may benefit for longer. I then decided maybe I should take it but it took a while to try and get the prescription, and never did, so I changed my mind back again.

I know from reading your posts that many of you are taking Riluzole, but has anyone else decided not to? Am I being a bit foolish?

[shelly21]

I don't think you are being foolish at all. If you do not want to prolong your life then you decide not.

I am on it because I read it can prolong the time before niv is needed. The trouble is that they haven't tested its real power or not power if you get my drift.

I think a lot of people get unwanted side effects from it. I don't.

Its a personal choice.

[Onein300]

It is a personal decision but I have been taking for over 8 years and no side effects. You need to test for liver issues, 3 monthly for a year and they generally show up very early.

On the whole it is tolerated well compared to most of the drugs I see people taking for symptom control and stopping it is easy.

The data on long term use is pretty conclusive now with about 10% extra life, not just the 2/3 months from the original trials.

The original trials were only 18 months study, so the bounds of extra life were, by logic, locked at a percentage of the 18 months, Ie about 10%.

The same mathematical model used for 5 years and 10 years taking it is showing about 10% extra life.

Lee

[matthew55]

I gave up riz almost straight away. I have no wish to extend this standard of living. You are not alone. 👍😁🤗🤝xx

[Olivia H]

I was prescribed it but after a few months of feeling it wasn't right for me (upset stomach) stopped. No problem with my doctor, it was my choice to make.
x

[JamesW]

It’s your choice Hope and I wish you well with whatever you choose.

James x

[Hope]

Thanks everyone. Just having a little wobble today which is making me wonder if I am making the right decision. I do feel it is the right decision for me though. x

[Ellie]

Just having a little wobble today which is making me wonder if I am making the right decision. I do feel it is the right decision for me though.

It's just one more weapon in managing your MND, Hope, if it doesn't work out, it doesn't work out and, if it does, then great. xx

[Lynne K]

I’ve been taking Riluzone for over 4 years with no side effects. They are hard for me to swallow now but still getting them down me. They’ll go down my PEG tube in two weeks time xx

[shelly21]

Lynne K I use a liquid form called tiglutik. You should not crush riluzole. Some nhs authorities won't pay for the liquid form but I argued saying re my peg. The reason is the liquid form is very expensive. Please ask your gp for it. X

[Lynne K]

shelly21 thanks Shelly. I will if I wake early enough and can still use my hands for MyGP as they always close soon after when they have had 200 requests xx

[LindaB]

Hope I take Riluzole although I stopped for a while as I felt nauseous. I blamed Riluzole however I've been ok since restarting so I think I was wrong.
My view is if you can tolerate taking it then why not give it a go....we all will make different choices and there's no right or wrong 😉🤗

[bridoc2904]

My dear wife Angie who sadly left this earth on 29/10/2021 took riluzole for a while before deciding that the tiredness was impacting too greatly on her ability to enjoy what life she had left. It is only now that I wish she had continued with it, as i would have dearly loved to have had just one more day with her.

[shelly21]

Lynne K I asked for email contact at g.p. I quoted re speech issue and gold standard of care. You could write a letter with your request asking for all medications to be in liquid form. X

[Lynne K]

I’ve put a reminder in my phone for 7.55 as MyGP opens at 8 and often closes again by 20 past 8. I also emailed my neurologist to ask if she can send a request through to my gp but she’ll take ages to respond. Fingers crossed that I manage to fill in the MyGP form tomorrow morning and more fingers crossed that they will agree xx