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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?
    Warmly


    Andy

    ​Diagnosed 03/2015. One sided limb onset (arm) sporadic ALS/MND. MND hitting - now 50% left arm and 90% right arm, plus other bits including left shoulder

    "Things turn out the best for people who make the best of the way things turn out"

    #2
    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 Spinal (hand) Onset.
    Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

    Comment


      #3
      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; 23 July 2018, 15:16.
      MND Connect
      Contact us on 0808 802 6262 or at [email protected]

      Comment


        #4
        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 Spinal (hand) Onset.
        Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

        Comment


          #5
          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; 23 July 2018, 15:13.
          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.

          Comment


            #6
            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; 26 July 2018, 16:10.
            ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
            Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

            Comment


              #7
              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
              MND Connect
              Contact us on 0808 802 6262 or at [email protected]

              Comment


                #8
                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.
                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.

                Comment


                  #9
                  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
                  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


                    #10
                    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

                    Comment


                      #11
                      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 Spinal (hand) Onset.
                      Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                      Comment


                        #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

                        Comment


                          #13
                          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
                          Warmly


                          Andy

                          ​Diagnosed 03/2015. One sided limb onset (arm) sporadic ALS/MND. MND hitting - now 50% left arm and 90% right arm, plus other bits including left shoulder

                          "Things turn out the best for people who make the best of the way things turn out"

                          Comment


                            #14
                            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
                            MND Connect
                            Contact us on 0808 802 6262 or at [email protected]

                            Comment


                              #15
                              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
                              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

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