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Thread: Riluzole

  1. #1

    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 mndconnect@mndassociation.org

  2. #2
    Thanks Admin for the heads up!

    Doug

  3. #3
    Forum Member JAY TEE's Avatar
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    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.

  4. #4
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    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.

  5. #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/#

  6. #6
    Many thanks for the update Admin.

    Fingers crossed this is a diminishing problem now.

    Doug

  7. #7
    Forum Member Terry's Avatar
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    Hi all;

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

    Love Terry

  8. #8
    Forum Member nunhead_man's Avatar
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    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
    Andy

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

  9. #9
    Forum Member Lynne K's Avatar
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    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; 30th April 2019 at 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.

  10. #10
    Forum Member Lynne K's Avatar
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    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.

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