Page 2 of 3 FirstFirst 123 LastLast
Results 11 to 20 of 21

Thread: Taking Riluzole

  1. #11
    Forum Member Ellie's Avatar
    Join Date
    Oct 2012
    Location
    Dublin
    Posts
    2,776
    Hi Lynne,

    For every prescription med, there is a Patient Information Leaflet (PIL) which should be enclosed in every dispensed medicine, and a Summary of Product Characteristics (SmPC) which is a document required by the EC before a Marketing Authorisation is granted and has more detailed info than the PIL.

    This is from the SmPC for Riluzole: The rate and extent of absorption is reduced when riluzole is administered with high-fat meals (decrease in Cmax of 44%, decrease in AUC of 17%)

    All PILs and SmPCs are available online.

    Hope this helps.

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

  2. #12
    Yes - half an hour before or two hours after food, which would otherwise decrease the absorption.

    This was discussed a while back and I posted the advice given to me by the care coordinator at my MND clinic.

    But it doesn't just apply to Riluzole. Apparently all medications - except NSAIDs, e.g Ibuprofen, which should be taken WITH food - would benefit from this regime.

    Doug

  3. #13
    Forum Member nunhead_man's Avatar
    Join Date
    Jul 2017
    Location
    London
    Posts
    222
    I'm coming back to this is curiosity got the better me this morning and I googled "coffee and riluzole" as I had a cup of coffee without thinking within the hour after I took my tablet this morning.

    Found a reference and says that caffeine causes retention of riluzole in the system and may result in overdose?

    E.g.https://www.rxwiki.com/riluzole
    Andy

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

  4. #14
    Forum Member MNDConnect's Avatar
    Join Date
    Mar 2016
    Location
    Northampton
    Posts
    145
    The European Medicines Agency product information states that caffeine could potentially decrease the elimination rate of Riluzole.
    We would suggest that if you are concerned that you speak to your GP, Consultant or Pharmacist.
    I have spoken to our care information team about including this information on the Riluzole information sheet
    We will be looking to gather further information about the effects of caffeine and Riluzole elimination and will update you with any findings.

    With kind regards

    Jacqui
    Senior MND Connect Adviser

  5. #15
    Forum Member Terry's Avatar
    Join Date
    May 2012
    Location
    UK
    Posts
    7,354
    Thanks Andy and Jacqui;

    I would not worry too much about things as many of us have been drinking alcohol, coffee, coke, etc a lot of the time, not too excess though.

    But having said that it's always nice to know what is best so that we can strive towards that.

    It is good clear information that says a lot of the things that we have been saying.

    Love Terry

  6. #16
    Forum Member JAY TEE's Avatar
    Join Date
    Apr 2014
    Location
    Halesowen, West Midlands
    Posts
    224
    Taking Riluzole. Been on now coming up 5yrs. Always take half hour before breakfast always weetabix mashed fruit yoghurt and second tablet at 5pm usually hour before tea. Had blood test after first six months then yearly. Best wishes John

  7. #17
    Forum Member nunhead_man's Avatar
    Join Date
    Jul 2017
    Location
    London
    Posts
    222
    Good morning,

    Quote Originally Posted by MNDConnect View Post
    The European Medicines Agency product information states that caffeine could potentially decrease the elimination rate of Riluzole
    Yes that's what I thought - so am I barmy to assume that that is good in terms of reducing the stuff that causes motor neurone disease providing it doesn't screw up my liver?

    Best of all

    Andy
    Andy

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

  8. #18
    Forum Member nunhead_man's Avatar
    Join Date
    Jul 2017
    Location
    London
    Posts
    222
    Hi John

    Quote Originally Posted by JAY TEE View Post
    Always take half hour before breakfast
    Interesting - I've got used to waiting an hour after I take Riluzole before I eat anything, and waiting two hours after I eat anything before I take it, per the guidance

    Warmly

    Andy
    Andy

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

  9. #19
    Forum Member Lynne K's Avatar
    Join Date
    Nov 2017
    Posts
    508
    Thanks Ellie and everyone else for their comments. I don't like coffee so that isn't my problem. I have a couple of mugs of tea per day. Would you think the smaller amount of caffeine in that be a problem? Thanks. Lynne
    ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
    I'm staying positive and taking each day as it comes.

  10. #20
    Forum Member Ellie's Avatar
    Join Date
    Oct 2012
    Location
    Dublin
    Posts
    2,776
    Lynne, I'd say at least 90% of us on Riluzole, who can drink safely, consume caffeine, be it in tea, coffee, cola or other sources, and have done so since Riluzole came onto the market.


    I take a pragmatic view of living with my ALS/MND - you know what, it's my weak respiratory muscles which will kill me, not the chance that an indeterminate amount of caffeine may delay elimination of Riluzole from my body.

    Day-to-day life with an MND is difficult enough, so I, for one, won't be giving up my daily mug of fresh coffee !! (which is a good laxative)

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

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •