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Thread: Riluzole

  1. #11
    Forum Member Terry's Avatar
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    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.

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  2. #12
    Forum Member Pinkelle's Avatar
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    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.

  3. #13
    Forum Member Ellie's Avatar
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    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 Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  4. #14
    Forum Member Pinkelle's Avatar
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    Thanks ellie. I'm sure if I start taking another one it will be OK.

  5. #15
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    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?

  6. #16
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    Hello
    As Riluzole is the only drug available unless Tony has really adverse side effects consider sticking with it a bit longer. I had digestion problems for several weeks when I started taking it and was very tired then it stopped, so it possibly takes time to adjust. Consultants vary in how much faith the have in Riluzole.

    I have just tried Baclofen for cramps. After ten days taking one each night I could not get out of bed. I felt hung-over and lost interest in doing anything. so have stopped taking it. It has taken me a week to begin to feel normal again. However, I know some that many people do not have a problem with Baclofen. Everyone's body tolerates drugs quite differently.

    My GP has given me an alternative drug but I am wary of taking anything at all now.

    I hope Tony stabilises quite soon. I was told that Riluzole has a longterm effect and extends tife but not to expect to notice a slowing down of symptoms. MND follows its own path. What an awful illness this is. Tony is so lucky to have you to care for him, but do take care of yourself.

    Love

    Annb

  7. #17
    Forum Member Ellie's Avatar
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    Quote Originally Posted by Annb View Post

    I have just tried Baclofen for cramps.

    My GP has given me an alternative drug but I am wary of taking anything at all now.
    Hi Annb,

    There are much better meds than Baclofen to counteract cramps. Baclofen works well as an antispasmodic, and should be started at a minimal dose (5mg max) and gradually increased, giving the body time to adjust to the drug.

    Quinine Sulfate or Magnesium work better on stand alone cramps. May I ask what med your GP prescribed for you?

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  8. #18
    Forum Member Ellie's Avatar
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    Quote Originally Posted by Devonmaid View Post
    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?
    One of its side effects is fatigue, which would make Tony feel weaker. It does take several weeks for one's body to get used to the drug. People sometimes are told to just take 1 Riluzole tablet for the first 2 wks, then introduce the 2nd tablet.

    He should be due his first monthly blood test to check his liver function, so that will identify any problem there.

    If Tony really doesn't get on with Riluzole, it's not exactly a miracle drug, so he shouldn't beat himself up about it if he stops taking it, but give it a good try.

    Ellie x.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  9. #19
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    Hello Ellie

    I was put straight onto 10mg of Baclofen to be taken at night which might well why I felt so dreadful if you suggest it should only be 5mg. I had been using Ibuprofen as necessary for discomfort but my GP changed that to Naproxen night and morning. I think the combination of both together may have caused my problem. He felt Ibuprofen was not recommended although all my blood tests were stable.

    I collected my new prescription today and appear to have been given Clonazepan 0.5mg one to be taken at night. To my horror it states I must not drive. As I live alone and my car is essential so I have already decided not to take this drug. I am tired enough without dosing myself up!

    I have begun to massage my legs with Magnesium oil. I have a bio-mat detox each week together with a session of reflexology. I am considering Canabis Oil too.

    I very much enjoyed a visit to Dublin a few years ago with member of my Humanities Group. We followed the James Joyce walks. Beautiful City!

    Take care Annb

  10. #20
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    Thanks for the advice Ellie - blood test on Friday I believe x

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