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Thread: Taking Riluzole

  1. #1
    Forum Member nunhead_man's Avatar
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    Taking Riluzole

    In your guidance note at https://www.mndassociation.org/wp-co...a-riluzole.pdf you give a good summary of the drug and its impact.

    As I'm just coming up to the end of my first year of taking it with my last blood test it occurs to me your briefing doesn't cover two things which I've heard mention in the forums -

    • the need for blood tests in the first year of taking the drug in order to make sure that there is no liver damage
    • the need to take the drug either one hour before eating or two hours afterwards as fact in the gut reduces or stops absorption of the drug



    Am I right that these two things are correct and relevant?
    Andy

    ​Diagnosed 03/2015. Limb onset (arm) sporadic ALS/MND.

  2. #2
    Forum Member Ellie's Avatar
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    Hi Andy,

    There is mention of both when to take Riluzole (though a reason why isn't given) and on liver function testing on P2-3.

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.

  3. #3
    Forum Member MNDConnect's Avatar
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    Hi Andy,

    You are right both things are very relevant.

    I have just double checked the information sheet can see that both points are mentioned however not in great detail. The blood test is mentioned on page 3 and says to take 1 hour before food or 2 hours after to decrease nausea.

    The blood test is mentioned on page 4. I have spoken with the care information team and they are looking into adding a statement about being monitored when taking Riluzole.

    Best Wishes,

    Adele
    Last edited by MNDConnect; 23rd July 2018 at 16:16.

  4. #4
    Forum Member Ellie's Avatar
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    It does annoy & astound me that there is no mention on the Patient Information Leaflet supplied with our Riluzole tablets, advising not to take the tablet on a full stomach
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.

  5. #5
    Forum Member Terry's Avatar
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    Quote Originally Posted by MNDConnect View Post
    The bloody test is mentioned on page 3 and says to take 1 hour before food or 2 hours after to decrease nausea.
    Well picked up Andy ;

    I could be wrong Adele, but I don't think that taking it 1 hour before food or 2 hours after is to decrease nausea. I believe that it is to get the best effectiveness from the drug. It is also ideal to take it twelve hours apart. But nether point is over important so certainly not needed.

    Whist updating the information sheet it should also be mentioned that some brands of Riluzole have a poorer coating on that can cause nausea and numbing of the mouth and throat. Glentec brand is particularly bad for this and is quite often the first prescribed

    Blood tests, I think should be carried out after a month and then at three month intervals, I now have mine done every nine months or so.

    Don't take what I say as gospel but I think that it is right

    Hi Ellie ;

    I have taken them on a full stomach sometimes it can't be avoided. I don't think that it does any harm but probably reduces the effectiveness of it. You are right in that better clearer instructions with this information should be given out with the drug.
    Love Terry
    Last edited by Terry; 23rd July 2018 at 16:13.
    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.

  6. #6
    Forum Member Ellie's Avatar
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    Fat decreases the amount of Riluzole absorbed by the body, hence the advice not to take it on a full stomach.

    However, if it makes you nauseous on an empty stomach, take it whatever way suits you best. The instructions actually say nothing about taking it on an empty or a full stomach.
    Last edited by Ellie; 26th July 2018 at 17:10.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.

  7. #7
    Forum Member MNDConnect's Avatar
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    Quote Originally Posted by Terry View Post

    Whist updating the information sheet it should also be mentioned that some brands of Riluzole have a poorer coating on that can cause nausea and numbing of the mouth and throat. Glentec brand is particularly bad for this and is quite often the first prescribed
    Thank you for this Terry, I will pass this information onto the team Terry for them to look into adding to the information sheet.

    When it comes to medication we would always advise following the recommendation of the pharmacist/GP, often they would include advice over how to take this on the prescription label. If someone is unsure the pharmacist or the GP would be able to provide further clarification.

    Blood tests usually happen monthly for the first 3 months and then quarterly for the remainder of the year. After this point it should then be monitored by the GP and the frequency will be agreed by them.

    Best Wishes,
    Adele

  8. #8
    Forum Member Lynne K's Avatar
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    I was under the impression that the one hour before/one hour after food rule was for those people taking Riluzone that feel sick because of it. I don't and can take it either with or without food. Where would I find the information mentioned about fat inhibiting the uptake of the effective ingredients of Riluzone. As you all say we ought to be given full information.

  9. #9
    Forum Member Terry's Avatar
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    Hi Lynne;

    one hour before/one hour after food rule was for those people taking Riluzone that feel sick
    I'm not really the right person to talk about medication but I can't see that taking riluzole on a empty stomach would improve the feeling of sickness. I would have thought that taking them with food would have reduced any sickness feeling as they would be diluted. I believe that the reason for taking some drugs on a empty stomach (1 hr before or 2 hr after) is to make them more effective.

    Ellie might be able to point you in the right direction for the technical stuff.

    It might be good for the Mnda to get some professional advice regarding these points.

    Love Terry

    Love Terry

  10. #10
    Forum Member JAY TEE's Avatar
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    Nun head others, the drug taking about right hour before two after. The blood test I took blood test twice for first two years and after annually. Been on them now for four years next test January. Best wishes John

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