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Liver function on Riluzole

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    #16
    Good afternoon,

    Yes I do think it is worth persevering - There seems to be some work being done that suggest that riluzole is actually more effective than it was originally thought to be in its clinical trial - I'd post the reference but I can't seem to find it at the moment
    Warmly


    Andy

    ​Diagnosed 03/2015. One sided limb onset (arm) sporadic ALS/MND. MND hitting - now 50% left arm and 90% right arm, plus other bits including left shoulder

    "Things turn out the best for people who make the best of the way things turn out"

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      #17
      nunhead_man Hi Andy. Yes, I'd seen that. I think it was something to do with the research study having a short time span so they couldn't wait until everyone's life span was known.
      Each day is made easier with a bit of humour.

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        #18
        It's the Real World Evidence of Riluzole you're looking for. There are a few papers on it but this one sums it up: https://www.ncbi.nlm.nih.gov/pmc/art...dnnd-7-061.pdf
        ​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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          #19
          denise
          I notice my legs are tinted yellowish and I presumed jaundice
          Anthony, my now husband of a month, said he thought it was as a result of my sun tan from the summer sun
          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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            #20
            Now I looked it up and I couldn't see yellowing of the skin. Thanks for letting me know. I don't know, actually I'm pretty sure, stephen hasn't had blood tests for this. Thing is what do you do if there is a problem with taking the medication? Weighing up taking it or not?

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              #21
              Jeanette Pearce Are you jaundiced? I couldn't work it out, doh!! 😧

              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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                #22
                Isn't yellowing of the whites of your eyes a better indication of jaundice?
                Each day is made easier with a bit of humour.

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                  #23
                  Doug I love that, Cream is the new lettuce, great for a chuckle this forum (but Gary, hope the irritation is nothing to worry about) x
                  Diagnosed July 2020, ALS bulbar onset.

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                    #24
                    Originally posted by GaryM View Post
                    Isn't yellowing of the whites of your eyes a better indication of jaundice?
                    Hi... my eyes are white so I’m probably overreacting - I should appreciate that my legs are tanned and not yellow... I’ve read all about MND and the signs to look for.
                    Note To Self:-
                    I need to stop worrying and just be grateful for my life and enjoy it instead of finding things to worry about ❤️
                    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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                      #25
                      Originally posted by Ellie View Post
                      Jeanette Pearce Are you jaundiced? I couldn't work it out, doh!! 😧

                      Love Ellie.
                      Thanks Ellie... May be I am ? May be I’m overreacting... I’ve had the blood tests and nothing has been mentioned so I’m not going to worry about it anymore. I’m going to use my energy for better things to think about. ❤️
                      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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                        #26
                        Jeanette I love your signature, and thanks for asking about signatures, I needed to know about them too x
                        Diagnosed July 2020, ALS bulbar onset.

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                          #27
                          Originally posted by Jeanette Pearce View Post
                          I’m going to use my energy for better things to think about.
                          For sure, Jeanette (especially if your eyes are white)

                          But it's also important to say, don't assume all ailments you may have are down to your MND. We are not immune from getting hammered by yet more conditions 😒 so we need to get things checked out.

                          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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                            #28
                            Thought I would just add that about a week before my PEG op, I was feeling very tired and lacking in appetite so I took the decision to reduce my Riluzole to one a day pending advice from the consultant. I was also struggling to swallow the evening tablet. I realise that may have been due to anxiety over the operation, but I've been surprised how different I've felt since. More energy and better appetite. I had another blood test in hospital last week and consultant advised to continue one per day and have another blood test around now. I'll probably try going back to two per day at some point, but wanted to share my thoughts.
                            Each day is made easier with a bit of humour.

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                              #29
                              I got Riz in liquid form, it's expensive so you have to mither.😉

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                                #30
                                You know your body best GaryM so if taking Riluzole once a day suits you best, or not taking it at all, there's nothing wrong with that.

                                I take mine crushed, through my tube.

                                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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