Riluzole - worth taking??

[richard]

Morning Gary

The feeling you are getting is totally normal. I’m on tablets as well. Not sure what it’s like in liquid form but if you are having difficulty in swallowing ask to have the liquid one.

Richard

[GaryM]

Apologies for reviving an old thread, but I've just started on Riluzole and because it takes a few swallows to actually get the tablet to go down it seems to numb the part of my tongue that it's sat on. Is this common? The effect wears off after about an hour and I can live with it, so I'm just curious really. I know you can get it in liquid form.

TIA

Gary

[Ellie]

👍 😃

[Guy]

ok the signature's working too now

[Guy]

Ah ok - it worked when I posted it. Unlike my signature (I'll try again Ellie!)

[Guy]

Hi - I've been taking riluzole for a bit over 3 years now with no noticeable side effects. You may have seen a recent paper looking back at a significant amount of data available since the original trials. it's pretty positive and implies starting as early as possible is likely to give the most benefits. A summary is given in the mnd research blog; https://mndresearch.blog/2020/07/28/...nded-survival/
Sorry I can't insert this as a hyperlink for some reason - if interested you'll need to cut and paste it into your browser.

[jd58]

Blood test today to start me off on this treatment and for the next 8 weeks whilst first taking it....

[Tan]

Hi, I've been on it now for 18 months.
I take one tablet every 12 hours. (the alarm goes off at 9:00 to remind me otherwise I'm liable to forget). Whether it does any good or whether there are unknown side effects I can't tell but as long as my liver function remains good then I shall continue to take it.
Hope this helps.
Tony

[Ellie]

Hi Stongehengeman,

If you're swallowing without coughing, getting enough calories, not losing weight and eating isn't an energy sapping chore, then nothing wrong in getting your full dietary requirements orally. If you need easy top-up calories, talk to your Dietitian/Nurse/GP about getting nutritional drinks which can go through your tube.

Take care.

Love Ellie.

[Stonehengeman]

I have Prog. Bulbar palsy and have taken riluzole ( initially once a day but since Mar 2018 twice a day)since diagnosis in Jan 2018. I do not know whether it helps, but the literature says it will give one extra months. I have now lost my speech but I am still able to eat though everything has to be chopped small. Even then it takes me twice as long to eat. I had a tube inserted almost 12 months ago, but I am not using it yet (It has to flushed daily with water).

[Coxl3]

Hi ! That’s interesting ! I too have ALS 3 years and was wondering will I keep on taking it as I’m dubious if it really does help !

[Lynne K]

I have been taking Riluzole for the past 6 months, twice a day, before meals, and do not believe I have had any side affects.
The question of whether it helps or not, is a good one, I have no idea. After 6 months I am "lucky" enough that only my arms have been affected, but they are progressively getting worse, but slowly, so I don't know if it has been the tablets that have slowed down the atrophy.

Hi, I did the same initially (took Riluzone before meals sometimes) until I read about a better way to take it. Food, especially fats hinders the uptake of it. So it’s advised to take it at least 1 hour before meals and no less than 2 hours after meals. It takes a bit of organising at first but becomes habitual after a short time. I’ve been doing this for a long time now with only an occasional blip ie when eating with friends or eating out. On these occasions we have no v control over meal times so I do as best I can. Lynne

[Doug Carpenter]

You're absolutely right Beemer.

None of us taking it can be our own control. But if you have no side effects and your liver function (ALT levels) are ok you might as well take as it's the only UK approved MND drug.

Doug

[Beemer]

I have been taking Riluzole for the past 6 months, twice a day, before meals, and do not believe I have had any side affects.
The question of whether it helps or not, is a good one, I have no idea. After 6 months I am "lucky" enough that only my arms have been affected, but they are progressively getting worse, but slowly, so I don't know if it has been the tablets that have slowed down the atrophy.

[Ellie]

That must a relief for you John.