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    Riluzole

    Hello,
    Starting taking Riluzole tomorrow morning the consultant has prescribed the following:
    Week one, one tablet in the morning
    Week two onwards, one tablet in the morning and one in the evening.
    After three weeks I am to go for a blood test.

    I am currently in Italy and I was wondering how simple will the transfer to a UK Hospital and a prescription for Riluzole be.

    #2
    Hi Chris,

    Be aware that Riluzole might make you tired/sleepy for a while after you take it, so bear that in mind.

    Hopefully someone has first-hand experience of moving to the NHS from another country and will post. In the meantime...

    I guess you first have to register with a GP, if you aren't already, and they'll refer you to an MND Care Centre. It would be helpful to bring your patient notes from your Neurologist with you (translated) although with the infamous Italian bureaucracy, that may take forever.

    I'd advise you to bring a few months supply of meds with you if you are not registered with a UK GP. You won't have an issue getting Riluzole for ALS/MND in the UK.

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

    Comment


      #3
      Hi Chrisp;

      Someone has done something similar in the last year but I can't remember who.

      I would follow what Ellie says, also Mnda connect could help if you have problems, email :- [email protected]

      I was advised to take Riluzole, 1 hour before or 2 hours after eating if I can. I have had it with food etc. Some say it makes you tired etc but along with others, I don't think that it's affected me.

      Love Terry
      TB once said that "The forum is still the best source for friendship and information."

      It will only remain so if new people post and keep us updated on things that work or don't work and tips.

      Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

      Comment


        #4
        Does anyone take supplements when they are on Riluzole? The consultant looked horified when we explained that prior to the Riluzole I had been taking AAKG tablets, Coenzyme Q-10 and 5-HTP (the last one is not a good idea with riluzole). And alcohol is verboten!
        Last edited by Chrisp; 15 April 2017, 16:19.

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          #5
          Hi Chrisp

          You should take a look at the 'Deanna Protocol' I think some of the supplements you're taking are on there. You can also go to their website 'Winning the Fight' about this illness and supplements, they have information on the subject as well.

          CCxx

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            #6
            Chrisp,

            I don't think that you need to avoid alcohol, just ensure that your usage is not excessive with Riluzole you do need to keep an eye on your liver function by taking regular blood tests. I think it is important to take your pleasures where and when you can, I still enjoy a glass or two of wine or a pint of beer but don't drink as much as I did when I was well.
            Last edited by John14; 27 April 2017, 13:23.

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              #7
              I was just given the prescription and have dived straight in and taken a tablet twice a day for the last fortnight. Am knackered but I refuse to give up my wine!x

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                #8
                I started on two a day as well SMT:

                Glasses of wine that is and Riluzole as well.

                Love Terry
                TB once said that "The forum is still the best source for friendship and information."

                It will only remain so if new people post and keep us updated on things that work or don't work and tips.

                Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

                Comment


                  #9
                  I'm still drinking. Two weeks into Riluzole Nausea and headaches. But sticking with it

                  Comment


                    #10
                    I found my head felt funny when I started taking them. Like a wave feeling just for a split second. Reduced the tablet to one a day and feel better. My gp has sent a message to my consultant to see if this is a good idea and will increase back to two. Not heard a thing back!

                    Comment


                      #11
                      Hi Tilly Mint and welcome to the forum;

                      How much are you drinking to get Nausea and headaches. It could be something to do with the Riluzole if it's only started two weeks ago.

                      Ask about coming of it for a few weeks and trying it again or maybe taking one a day like Pinkelle.

                      Pinkelle, I would have thought that your GP could advise you and monitor you regards to Riluzole. I am sure that they have the info and specification of it.

                      Love Terry
                      TB once said that "The forum is still the best source for friendship and information."

                      It will only remain so if new people post and keep us updated on things that work or don't work and tips.

                      Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

                      Comment


                        #12
                        Hi Terry. My Dr didn't know when I asked him can I reduce, so he sent query to my consultant weeks ago. I've rang but the consultant hasn't got back to him. I've got mnd clinic in a couple of weeks so I can ask then. Really want to take the riluzole.

                        Comment


                          #13
                          Pink,

                          Riluzole is active in the body for 12hrs, hence it's taken 2x a day. There is nothing to stop you taking just one Riluzole per day on a short-term basis and see how it goes, then decide what to do.

                          You may find that lying down for half an hour or so after taking the tablet will mitigate your wooziness.

                          Good luck with it.
                          Ellie x.
                          ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                          Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                          Comment


                            #14
                            Thanks ellie. I'm sure if I start taking another one it will be OK.

                            Comment


                              #15
                              Tony has been on riluzole for nearly 4 weeks now and to be honest he is getting weaker than before - I am even wondering if he should come off it - has anyone else had this problem?

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