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Thread: Riluzole

  1. #11
    Forum Member Kayleigh's Avatar
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    Sun Pharma gets a thumbs up from me! I find their tablets have a much better coating than Glentek tablets. It's a race against time (usually max. 2 seconds) for me to swallow a Glentek tablet, before it starts to dissolve and I am hit with that rather revolting 'Riluzole flavoured' tang on my tongue.

    Not the best invention in the World - a tablet with a coating that makes it difficult to swallow, for patients whose symptoms often include difficulties with swallowing.

    Glentek might get first prize from the NHS, for cost effectiveness... but definitely no prize from me, for ease of swallowingness!
    Last edited by Kayleigh; 24th January 2019 at 00:10.
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  2. #12
    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

  3. #13
    Forum Member Terry's Avatar
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    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

  4. #14
    Forum Member Kayleigh's Avatar
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    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; 24th January 2019 at 16:55.
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  5. #15
    Forum Member Sueb's Avatar
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    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

  6. #16
    Forum Member Kayleigh's Avatar
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    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; 25th January 2019 at 01:17.
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  7. #17
    Forum Member Terry's Avatar
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    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

  8. #18
    Forum Member Kayleigh's Avatar
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    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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  9. #19
    Forum Member Ellie's Avatar
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    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.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  10. #20
    Forum Member Kayleigh's Avatar
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    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; 25th January 2019 at 17:16.
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