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 !
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Riluzole - worth taking??
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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).
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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.Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.
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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
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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.Best
Robin
Diagnosed 05/2017 Familial ALS Limb onset
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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
GaryEach day is made easier with a bit of humour.
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Husband has been on it for 2 weeks, no side effects we can work out, still to have liver blood tests. As long as there is hope for longer life span/quality of life, he plans on keep taking it. i would support his decision if he stopped for any reason.
I know I keep banging on about dementia, that is were my nursing and family caring experience comes from.
Dad has been on Mementine (spelling/ which is one of the drugs in the new MND trial).
He has been on it for dementia for 12 years and is still at home and with personality.
Diagnosed at 59
Mum is on Aricept for Alzheimer's for 14 years, again still at home and with memory loss but still a version of herself, diagnosed at 56.
In my personal experience with drugs that may lengthen your life WITH the disease. It is a personal decision balancing side effects with what you class as quality of life. That is not to say that everyone with dementia (or MND) that takes this drugs will live beyond or to, the "average" length of life but in my personal opinion, hope is a good thing. I have also know people that do not take drugs for dementia that are still here over 10 years later.
This is because of earlier diagnosis now.
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