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  • Doug Carpenter
    replied
    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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  • Iron Will
    replied
    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.

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  • Ellie
    replied
    Jim, Riluzole tablets cost £11.47 per box of 56.

    Love Ellie.

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  • JimWright
    replied
    Just how much dose a box of this actually cost? Went to 5 chemists to get a box.

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  • Ellie
    replied
    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.

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  • Iron Will
    replied
    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 : )

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  • Kayleigh
    replied
    Hello Ellie,

    Many thanks for the interesting and enlightening information.

    It sounds like if a pharmacy is unable to order our preferred brand of tablet, this could be due to a factor such as availability, rather than cost.

    I hope you and your family have a lovely evening.

    Kayleigh x
    Last edited by Kayleigh; 25 January 2019, 16:16.

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  • Ellie
    replied
    If you check the NHS Drug Tariff, you'll see all brands of Riluzole tablets dispensed by a pharmacist are reimbursed by the NHS at the same amount (£11.47 for January 2019) and the liquid version, in-patent Teglutik at £200, for the same 28 day supply.

    IDK how, or if, pharmacies calculate or set dispensing fees in the UK.

    Love Ellie.

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  • Kayleigh
    replied
    Hi Terry,

    Thanks for the useful information. I was given Sun Pharma for a while but have been issued with Rilutek lately. Probably because it is much cheaper. Sun Pharma seems to be a lot more expensive than Rilutek.
    Love,
    Kayleigh x

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  • Terry
    replied
    Hi Kayleigh;

    August last year, I was given a different kind of Riluzole, made by Sun Pharma MA Holder Netherlands.

    Also, Oral suspension of riluzole approved by FDA but it has been available for sometime in the UK

    ITF Pharma has received marketing authorisation for the use of Tiglutik, a liquid form of riluzole, by people with MND in the USA. This form of riluzole is already available in the UK under the name of Teglutik, provided by Martindale Pharma, making this treatment more accessible to people with swallowing difficulties.

    I do wonder if there's some confusion with the pricing of tablets and the liquid.

    Love Terry

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  • Kayleigh
    replied
    Hello Terry,
    Did you used to have the Sun Pharma tablets? (I thought I remember you posting about them last year, on another thread, but I could be wrong).
    Kayleigh x
    Last edited by Kayleigh; 25 January 2019, 00:17.

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  • Sueb
    replied
    Steve has got Sun Pharma this time. They are much better.

    When we had them from before from boots they said that cost over £200 a months supply compared to £14 for Glentek.

    You can see why they want us to have Glentek but they just dissolve to quickly before you can swallow them. Steve didn’t have a problem with them in the early days has he didn’t have a problem with his swallow, but things change.

    Sue

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  • Kayleigh
    replied
    Hopefully, the liquid version of Riluzole has got a pleasant flavour!

    I suppose that the price of the tablets varies according to the quality of the coating. A bit like nurofen being more expensive than cheaper brands of ibuprofen, that don't always have such a good quality coating.

    Doug:- ' swallowingness ', just a random word that happened to pop into my head - I don't think it would get any points in Scrabble or on Countdown though!

    Kayleigh x
    Last edited by Kayleigh; 24 January 2019, 15:55.

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  • Terry
    replied
    Hi Doug;

    I think that over half of the side effects from Riluzole happen because it starts to dissolve in the mouth /throat area.

    Love Terry

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  • Doug Carpenter
    replied
    Swallowingness - lovely word Kayleigh!

    Seriously though, I hadn't appreciated the significance of the different speeds of dissolution. I can still swallow fairly well and all that happens sometimes is pins and needles on my lips.

    I've had various makes over the years and hadn't paid much attention.

    Doug

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