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Riluzole - worth taking??

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    #16
    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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      #17
      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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        #18
        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 working limbs - No speech - Feeding tube - Overnight NIV.

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          #19
          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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            #20
            Blood test today to start me off on this treatment and for the next 8 weeks whilst first taking it....

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              #21
              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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                #22
                Ah ok - it worked when I posted it. Unlike my signature (I'll try again Ellie!)
                Best

                Robin

                Diagnosed 05/2017 Familial ALS Limb onset

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                  #23
                  ok the signature's working too now
                  Best

                  Robin

                  Diagnosed 05/2017 Familial ALS Limb onset

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                    #24
                    👍 😃
                    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

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                      #25
                      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

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                        #26
                        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

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                          #27
                          I have decided to not take any more life extending drugs as I don't consider my current life one of quality. My neuro has agreed. I'm not suicidal just at peace with it all. x

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                            #28
                            Yep Gary, the numb tongue is a very common side effect. If it's bothersome, you can take the tab in a small bit of yoghurt or jam.

                            Love Ellie.
                            ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                            Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

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                              #29
                              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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                                #30
                                stephen has been taking it for 15 months and i do think it has slowed things down. he has had no side effects. after all this time we do have problems remembering to take the morning tablet = no idea why this is a problem!

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