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  • Barry52
    replied
    Hi Vjayp and welcome to the forum.

    As Edavarone is not licensed in the UK medical professionals will be reluctant to administer it. Whilst it was approved by the FDA the experts in the UK and Europe are sceptical of it’s value as a treatment for MND.

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  • Vijayp
    replied
    Does anyone know of places in the UK (ideally in the West Midlands) where edaravone can be administered? The meds can be imported to the Uk but I am finding it somewhat difficult to find a nurse / practitioner to administer it.

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  • Kayleigh
    replied
    Hi Jerry,

    It's not always easy to be positive about things ... but knowing that you and others in this forum family are coping with similar challenges to mine, due to this diagnosis, gives me the encouragement and strength to make the most of every day.

    It helps to know that I'm not the only person in the World facing the daily challenges that life with MND confronts me with.

    My family and friends don't have the same understanding of what I am going through, as you and others with MND on this forum have.

    I always like to hear from my forum brother in Thailand - you always cheer me up and I love those updates you post about that wonderfully enthusiastic American guy who is doing all he can to find an effective treatment for all of us. I'd be lost without your support and everyone else's support in this forum family! - please keep posting those positive vibes!

    Although times are not easy, I try to make the best of things ... one day at a time.

    Take things easy Jerry, and try to stay as positive about things as you can xx Not easy I know, but we've all got to try and stay as strong as possible for ourselves, our loved ones, and each other in this forum family. I hope you are looking after yourself xx

    Love and hugs to you and your wife,
    Kayleigh

    P.S How's the weather is Thailand? - it's got to be much better than it is in the UK at the moment! Hopefully you are still managing to get plenty of time to relax at the beach, and partake in a glass or two of your favourite alcoholic grape juice! Take care Jerry (and please try to keep in touch on the forum regularly, if you can! - or 'clucky mother hen' will worry about you, if you don't post for a while!)
    Last edited by Kayleigh; 8 March 2019, 18:31.

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  • Jer788
    replied
    Hi Kayleigh, what a great outlook you have and it’s shared by most on here xxx

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  • Kayleigh
    replied
    It sounds like the only option offered to us by the NHS could remain as Riluzole, for quite a while yet.

    Its always interesting to read about medical research and progress being made with drugs trials etc - but the way things are, I think I will concentrate most of my energy on trying to make the most of every day and having as much quality time as possible with my family and friends.

    Love and hugs to everyone in this forum family,
    Kayleigh x
    Last edited by Kayleigh; 8 March 2019, 00:59.

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  • Jer788
    replied
    Hi all, yes I see your point Ellie it is expensive and it’s unlikely the NHS would prescribe it for too many of us. I’m currently awaiting the results from an independent laboratory on the generic version. Will update when I know.
    Love Jerry

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  • Ellie
    replied
    I agree with you Kayleigh re questionable NHS funding for Edaravone if it ever were to be approved, likewise with my health service...

    An oral version of Edaravone is currently being prepared for Phase 2/3 of clinical trials (but I've no idea when) As it's a tablet and has a greater bioavailability of the drug than its infsion counterpart, it should be a lot cheaper than it is in its current form.

    However, the tablet form is likely at least a few years away...

    Love Ellie.

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  • Kayleigh
    replied
    Hi Jerry,

    Thanks for the update, and many thanks to your brother for contacting Kate Hoey about this issue.

    I don't know if Edaravone will prove cost-effective enough to be funded by the NHS, but Kate is a star for pro-actively supporting MND patients.

    It's windy and rainy in many parts of the UK today, and so I am enjoying my glass of wine indoors, relaxing in my comfy chair by the fire. It's good to hear that you enjoy a glass or two relaxing by the pool!

    Cheers,
    Kayleigh x

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  • Doug Carpenter
    replied
    Thanks for letting us know Jerry.

    Ms Hoey will need all her high jumping skills to clear that bar. But fingers crossed!

    I guess the problem might be cost and unknown method of action. Though presumably reducing oxidative stress is a current hypothesis.

    Nothing wrong with sitting by the pool!

    Doug

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  • Jer788
    started a topic Edaravone

    Edaravone

    Hi all, as some on here know I am currently receiving Generic Edaravone, however my brother has contacted his MP Kate Hoey on its availability in the UK. If anyone follows politics as I do they will know Ms. Hoey is an excellent parliamentarian who in turn contacted Matt Hancock the Minister for Health and it could become available in Europe by the end of the year if approved by the CHMP ( Committee for Medicinal Products for Human Use ).
    I hope I’m not telling Granny how to suck eggs here just thought I’d let u know I do more than sit in the pool and drink 🍷 all day.
    Love Jerry
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