Riluzole

[Andy wilson]

Hi everyone have just been diagnosed with mnd Dec 17 my only symptoms at moment are slight muscle loss and finger use in my right hand/ arm but can still use it. Haven't started taking the tablets yet? Do they do anything accept prolong it and would u recomend taking then thanks andy.

[Ellie]

Andy wilson Type the word Riluzole into the search box and you'll find various threads on it. General consensus is, yes, take it. You should get regular blood tests to make sure your liver is tolerating it. And, if people get other side effects - fatigue, nausea, for example - these typically lessen over time.

It is your choice to take it, or not.

Love Ellie.

[Shaun]

Andy , Ellie’s right, loads of discussions on this subject. If you can tolerate it, take it, every little thing helps, is my opinion
S.

[matthew55]

As the Devil's advocate I'm impelled to say that having taken and not taken the difference is negligible. 🙂x

[matthew55]

I should add we all different. 🙂x

[Shaun]

The way I see it Matthew, we are all different, we all progress differently so there isn’t really a set timetable of events, so it might not do anything but it might do something , suppose it’s like buying a lottery ticket, you might win a free go, or lots of £’s or didley squat , but we still buy a ticket
S.

[Ellie]

As the Devil's advocate I'm impelled to say that having taken and not taken the difference is negligible. 🙂x

Problem is that you just cannot tell whether or not it made any difference (nobody can) The longer it's taken, the greater its effect, as seen in real world experience, so 3 months is not long enough on which to base results.

I have no idea if Riluzole has added months on to each and every year I take it - I have no doppelganger who doesn't take it against which to compare myself!! So, I shall continue taking it, just in case 😏

[SueM]

Hi everyone have just been diagnosed with mnd Dec 17 my only symptoms at moment are slight muscle loss and finger use in my right hand/ arm but can still use it. Haven't started taking the tablets yet? Do they do anything accept prolong it and would u recomend taking then thanks andy.

Hi Andy, I’m just into my second month on Riluzole, I have had some side effects but all are tolerable. To me it was a no brainier, I had a delay in my diagnosis due to Covid so am probably further on with arm weakness than you but anything that may help to slow things down is worth a go. I am being monitored with regards to it having a detrimental effect on my liver, so far so good. As long as you can tolerate it surely it’s worth a go.

[richard]

I have slow progressive MND. I was reluctant to take Riluzole for the rest of my life to gain just three months more. My consultant told me that the three months was based on the aggressive MND when life expectancy could be only 18 months. Therefore the three months is in fact just over 16%. So if ones MND is such that you might have five years you could gain another 10 months +.

But we are all different.

Take care and stay safe
Richard

[Onein300]

Riluzole is STILL the only proven drug globally to increase life span. You might be surprised to hear it is the ONLY drug in any Neuro degenerative disease to slow disease!

The 3 months figure was based on a mathematical model in 3 separate 18 month trials with over 5000 people.

The same mathematical model for the drug being taken for years leads to about a 10% increased lifetime.

So if taken for 5 years, that about 6 months, 10 years 1 year.

It is NOT a symptom drug, so you will not notice anything at all. But this does not mean its not working.

It has a high safety profile, with problems appears within first 6 months typically. Also you stop quickly or restart safely.

It’s a no brainer.

[matthew55]

If you think I want to extend this life you are way off. 😁

[Onein300]

If you think I want to extend this life you are way off. 😁

Matthew,

I understand completely.

But it’s worth noting, for newly diagnosed. The earlier we start any treatment, for whatever disease, the better the outcome.

For those awaiting diagnosis in the wings (2000 a year in U.K.), we should encourage them to take ASAP.

Realistically, the first and most powerful treatments will be those targeted at early disease, just like we do for other diseases.

For example statins and some ACE inhibitors in heart disease are staggeringly effective in preventing heart disease and I am in no doubt in the next few years will be taken (or a following technology) by pre-symptomatic patients.

Lee

[matthew55]

I was on R from May for about four months but nothing would have stopped my loosing my voice or drowning in saliva. False hope is no hope. But everyone is different so peace bro. 😊