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    justme

    does anyone have information on withdrawal symptoms if you stop taking riluzole? Side affects from taking it are getting too bad

    #2
    That's a shame. What side-effects is your husband getting? I started taking it about a month ago and I don't think I'm getting any, although I do feel more tired, but I put that down to the illness. Someone more knowledgeable than me will be along shortly to offer advice.
    Each day is made easier with a bit of humour.

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      #3
      My husband complained of tiredness so we thought perhaps the medication. He didn't have any other complaints but he decided to not take it for a week just to see if there's a difference. It was just the same so he's gone back to taking it.
      🤔

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        #4
        Riluzole seem to make him extremely lethargic, back pain, bizarre colourful dreams, feeling sick and it appears that his condition has got far worse since starting the drug. could just be the way its going, but he is keen to come off the drug. Blood tests next week to see if any damage is being done

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          #5
          justme Welcome to the Forum.

          There are no special precautions to stopping Riluzole.

          If he wanted to try taking just one tablet per day to see if that's any better, that would be an option.

          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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            #6
            I gave it up and no consequence. 😄👍

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              #7
              Hi justme and welcome,
              I have had spells of not taking it without any withdraw symptoms, but fortunate that any side effects I do get are mild and did not notice any difference, except a bit more wobbly for the first couple of days when I started again
              s
              As long as there’s golf and beer I’m happy

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                #8
                Hello Just Me and Welcome
                i have been taking Riluzole since July this year.
                I became tired and slept straight after taking it.
                Today I have been feeling a little nauseous in my tummy so I will see how it goes.
                I wish you safety and comfort and hope you enjoy this forum where there is a real bonding and feeling of belonging with others who are sharing your experience
                Best Wishes
                Jeanette
                I have the ability to cope with this and I can still be the best person I can be. This is my life - if I am happy others around me are happy too

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                  #9
                  Jeanette, Justme and anybody else who feels sick after taking Riluzone, are you making sure that you only take it on an empty stomach? A minimum of one hour before meals and/or two hours after meals is recommended. Riluzone can give us between 9 and 18 months extra time so worth trying to find a sickness solution. I’ve been taking it for 3 years with no apparent symptoms, but we are all different. Good luck, Lynne
                  Last edited by Lynne K; 11 October 2020, 13:43.
                  ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
                  I'm staying positive and taking each day as it comes.

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                    #10
                    Justme, I started to take riluzole in July after diagnosis, it was just sent to me in the post. I was fine in the first week, then felt more and more sick, terribly tired and really ill after a while (and only then realised it was a side effect (confirmed) and stopped taking it (on advice from specialist nurse), and after a few days felt completely okay again. I had noticed in the mnda videos of Q &As about covid during lockdown, the advice was to stop taking it if you were in the first 3 months of using it as you might not be able to have the blood tests (ie it was quite okay to suddenly stop), but if your husband is just about to have a blood test, good to check with your neurology team?? Hope he can get good advice/help soon x
                    Diagnosed July 2020, ALS bulbar onset.

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                      #11
                      Hi everyone,
                      my husband decided himself to stop taking Riluzol after his first blood test. Not had results yet obviously, but the change in him since he has stopped taking the drug are quite good. No change in his movements , speech etc but we didn't expect that. But he has been able to get back to reading , atually getting dressed raher than sitting in PJs all day, he has been doing bits of work in workshop and actually smiling again. It is great to see.

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                        #12
                        That's good x
                        Diagnosed July 2020, ALS bulbar onset.

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                          #13
                          Definitely the right decision for him.

                          Riluzole is no miracle drug - if its side effects diminish quality of life, people should not feel pressured to continue taking it.
                          ​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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                            #14
                            I've been off it for a while and I feel fine x

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                              #15
                              Hello Lynne
                              Thank you for your info
                              I have had no further issues or feelings of sickness after I posted
                              Like everyone else I just feel tired
                              Best Wishes Jeanette


                              I have the ability to cope with this and I can still be the best person I can be. This is my life - if I am happy others around me are happy too

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