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    Riluzole

    We are aware of a reduced supply of the drug riluzole, this is due to some manufacturers ceasing production.

    We are currently liaising with the Department of Health and Social Care and manufacturers who are working to speed up and increase production.

    It is important to know that riluzole is a NICE approved drug and people with MND are legally entitled to this. If you are turned away at the pharmacy as the ‘generic’ riluzole product is out of stock, your prescriber can make a prescription for a branded product e.g. Rilutek or Teglutik. Riluzole is the same whatever the brand prescribed though Teglutik is a liquid form which could be a change for some people.

    Whilst our MND Connect team are unable to offer any further information on where to source riluzole, they are available should you have any additional queries or concerns. The team can be contacted on 0808 802 6262 or via [email protected]

    #2
    Thanks Admin for the heads up!

    Doug

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      #3
      Admin thanks, my chemistry would not provide my Riluzole as said it would cost them £300 for four week pack. Luckily my local hospital provided it and had same update.

      Comment


        #4
        Thank you, Admin. My surgery said today that they have run out of generic riluzole, but are going to get some branded riluzole for me at around five times the price of the generic product.

        Comment


          #5
          Hi all,

          We have an update on the a Riluzole supply issue.

          The MND Association has made the Department of Health and Social Care (DHSC) and manufacturers aware of the issues being raised with us by our members. Madeleine Moon MP, Chair of the APPG on MND, tabled a question in Parliament asking what actions the DHSC is taking and we have received an official statement. Please see the below link for further information.

          https://www.mndassociation.org/news-...supply-issue/#

          Comment


            #6
            Many thanks for the update Admin.

            Fingers crossed this is a diminishing problem now.

            Doug

            Comment


              #7
              Hi all;

              I don't think that they had any trouble getting mine.

              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


                #8
                Good evening,

                I popped into my pharmacist yesterday having seen this thread in passing and he says he still cannot get any riluzole - his understanding was that manufacturers are having difficulty obtaining 1 of the components which differ slightly from the story in the original post - no idea here of course, which is right.

                All I do know is the tablets I have here say they expire on 05 2019, which is a bit much, since I still have 2 months apply.

                Anyone know if this is sell by date that I can ignore?

                Best of all

                Andy
                Warmly


                Andy

                ​Diagnosed 03/2015. 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


                  #9
                  Sorry about your lack of Rilozone pills Andy. My husband picked up my prescription from Asda in Radcliffe (I usually get them either from Tesco or a small chemist in Bury). This time they are from a different manufacturer: Sun Pharma, a Netherlands Company. These are film covered so likely easier to swallow and won't break up in my mouth like the others sometimes do (Glentek). I hope that after Brexit happens there are no problems getting hold of these. Lynne
                  Last edited by Lynne K; 30 April 2019, 21:31.
                  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


                    #10
                    That's disgusting Jay Tee. I'm glad that you got your Rilozone from your hospital. 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.

                    Comment


                      #11
                      Hi Andy,

                      The advice from the NHS is that 'you should not take medicines after their expiry date':-

                      http://https://www.nhs.uk/common-health-questions/medicines/why-do-medicines-have-expiry-dates/

                      Perhaps the pharmacy didn't check the expiry date before issuing them to you?

                      Best wishes,
                      Kayleigh
                      Last edited by Kayleigh; 1 May 2019, 00:59.

                      Comment


                        #12
                        Good afternoon Kayleigh

                        Originally posted by Kayleigh View Post
                        The advice from the NHS is that 'you should not take medicines after their expiry date':-
                        Interesting – as I mentioned elsewhere I saw my neurologist last Thursday and asked that very question and he rang the King's Pharmacy who said that in the light of how that particular preparation was made. It was okay to carry on taking them for a month or so after the expiry date.

                        These are from Sun Pharma , which I take in preference to the Glentech ones as they burn my mouth.

                        Warmly

                        Andy
                        Warmly


                        Andy

                        ​Diagnosed 03/2015. 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


                          #13
                          Thanks for the update Andy.

                          It appears that the advice about expiry dates on the NHS website is not strictly correct for all medication-.as there is some flexibility about when Riluzole actually needs to be used by. I will be very wary about what I read on the NHS website in future.

                          Best wishes
                          Kayleigh
                          Last edited by Kayleigh; 13 May 2019, 20:29.

                          Comment


                            #14
                            I have a couple of spare boxes if anyone is in urgent need.

                            Comment


                              #15
                              Good evening,

                              As I said above I prefer the tablets from Sun Pharma , which I take in preference to the Glentech ones as they burn my mouth.

                              So I went into my pharmacist today to get my next 6 month supply and lo and behold, he gives me the Glentech ones, knowing full well I do not like them at all, saying he cannot get the Sun Pharma ones.

                              Does anybody have any information?

                              Warmly

                              Andy
                              Warmly


                              Andy

                              ​Diagnosed 03/2015. 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

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