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Thread: Riluzole

  1. #1
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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. #2
    Forum Member Ellie's Avatar
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    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 Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  3. #3
    Forum Member Terry's Avatar
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    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 :- mndconnect@mndassociation.org

    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.

  4. #4
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    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; 15th April 2017 at 16:19.

  5. #5
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    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
    .

  6. #6
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    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; 27th April 2017 at 13:23.

  7. #7
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    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

  8. #8
    Forum Member Terry's Avatar
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    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.

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

  10. #10
    Forum Member Pinkelle's Avatar
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    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!

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