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    Are you taking Riluzole?

    I'm just curious about people's use of Riluzole.
    35
    Never taken it
    20.00%
    7
    Taken previously but not now
    11.43%
    4
    Taking it currently
    68.57%
    24
    Each day is made easier with a bit of humour.

    #2
    Consultant said to my husband he couldn't see the point of taking it, but then again he has PMA and not ALS so perhaps theres a different need?

    Sue
    Husband Albert diagnosed PMA Feb 21

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      #3
      Suefromwakey Riluzole is routinely prescribed for people with a PLS diagnosis, Sue, so if Albert wants to take it, he shouldn't be stopped, unless there's a medical reason. I'm sure you know that many with PMA unfortunately progress to ALS over time. x
      ​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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        #4
        Gary I’ve voted on behalf of Ann. The reason she didn’t take it was primarily because the consultant said it might make a difference of a couple of months.

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          #5
          I voted yes on behalf of Stephen

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            #6
            I don't take it.As you know I go to the same clinic as your husband, Albert , Sue. I was originally told my MND was ALS but after a second opinion and repeat EMG I was told that at present it was PMA as there was no evidence of upper motor neurone involvement. Apparently riluzole has no impact on PMA. I was told I could take it if I felt strongly about it.

            I know that PMA can develop into ALS and I was offered regular tests, although surprisingly they're not my favourite thing. I have a clinic appointment soon so I'll put it on my list of things to discuss.

            Love Debbie x

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              #7
              I took it for a month or two but it made me feel really ill so stopped it.
              Diagnosed July 2020, ALS bulbar onset.

              Comment


                #8
                Hi Gary ,
                I have chosen to stop taking it and saw my neurologist today who understood my rationale for my decision.I guess this is a personal decision that people choose to take it or not.
                I certainly would not want people on this forum to be influenced in any way by my decision.
                I hope people way up the pros and cons and read the research, or talk with their neurologist and then make their informed and personal choice whether to take riluzole or not.
                Best wishes
                Mary

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                  #9
                  Took for 4 months but suffered awful nausea, so stopped. That was 9 years ago.

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                    #10
                    Ain't no spam init!

                    https://www.youtube.com/watch?v=_bW4vEo1F4E
                    Copyright Graham

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                      #11
                      Thanks for taking the trouble to vote or comment. I thought it might be interesting, particularly comments from people who've stopped taking it. I frequently ask myself why I'm taking it, especially when we've both had a stressful day. I see the distress that my deterioration causes Louise every day and wonder why I would want to prolong that.
                      Each day is made easier with a bit of humour.

                      Comment


                        #12
                        Originally posted by Suefromwakey View Post
                        Consultant said to my husband he couldn't see the point of taking it, but then again he has PMA and not ALS so perhaps theres a different need?

                        Sue
                        Sue, I was offered it even though my diagnosis is PMA, had to stop though as it affected my liver

                        Comment


                          #13
                          Originally posted by GaryM View Post
                          Thanks for taking the trouble to vote or comment. I thought it might be interesting, particularly comments from people who've stopped taking it. I frequently ask myself why I'm taking it, especially when we've both had a stressful day. I see the distress that my deterioration causes Louise every day and wonder why I would want to prolong that.
                          Whilst it is a small random sample it’s interesting to see that of those who have taken it 25% have stopped.

                          Richard
                          Richard

                          Comment


                            #14
                            I'll say it again, I don't want to extend my life as it is at present. 😊
                            Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

                            Comment


                              #15
                              Originally posted by matthew55 View Post
                              I'll say it again, I don't want to extend my life as it is at present. 😊
                              I'm coming round to your point of view. I feel as if my life could actually be a lot more bearable if I could just get some of the problems sorted out. Like a day off for Louise or someone taking an interest in helping me to control my saliva etc.
                              Each day is made easier with a bit of humour.

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