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Thread: Riluzole

  1. #21
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    having nightmares with this. can't find a stockist for any brand. Boots have promised me some tomorrow, lets see. all about money this.

    I have rang Salford Royal to see if they can help. awaiting a call back.

    I asked my local chemist if he could sell my wheelchair when i'm dead as it may release funds for the next victim : )

  2. #22
    Forum Member Ellie's Avatar
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    Hi Will,

    If you still can't get Riluzole tomorrow or have problems with its supply again, the MNDA have a deal with Dialachemist which guarantees supply of the drug.

    This is an extract from an MNDA Info Sheet (05a):

    The MND Association monitors disruption in the supply of riluzole and would appreciate any information related to this subject should you have any problems.
    Please contact our helpline, MND Connect, if you experience supply issues.
    Our arrangement with Dialachemist is one of the ways we have tried to ensure an improved supply (see next heading).

    Dialachemist: free home delivery prescription service
    In the past, riluzole could only be distributed by one licensed supplier, but this is no longer the case. As a result, the MND Association has negotiated a home delivery prescription service with Dialachemist Ltd.
    This NHS registered online pharmacy is fully regulated by the General Pharmaceutical Council (GPhC). They are staffed by fully qualified pharmacists and technicians and deliver direct to your home or other nominated address across the UK.

    The benefits are:
    free home delivery (no delivery cost to the recipient)
    a service tailored to individual need
    guaranteed on-going supply of riluzole
    direct interaction with trained professionals to address any concerns.

    The Information Sheet in full : https://www.mndassociation.org/wp-co...a-riluzole.pdf

    Good luck.

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  3. #23
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    Just how much dose a box of this actually cost? Went to 5 chemists to get a box.

  4. #24
    Forum Member Ellie's Avatar
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    Jim, Riluzole tablets cost 11.47 per box of 56.

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  5. #25
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    Jun 2018
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    that's great Ellie thank you. Boots came up trumps last night, I got a months supply. will bookmark your post as to avoid any further worries. I am not usually one to panic but was rattled there for a while.


    thanks again.

  6. #26
    Today I received my usual 3-month's supply of Riluzole via Pharmacy2u. Various random makes have tended to turn up, which is not a problem for me. But this batch is a new make "Mylan".

    My only complaint is the ridiculously large box: 145 x 85 x 35 mm.

    Doug

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