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Thread: Edaravone/Radicut

  1. #11
    Forum Member Ellie's Avatar
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    Hi Steve,

    Have you had any joy re finding a prescribing doctor?

    Ellie.
    ​Diagnosed 03/2007. Limb onset (arm) sporadic ALS/MND.

  2. #12
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    Hi Ellie,
    Not yet. Have you any contacts that may be able to help?
    Steve

  3. #13
    Forum Member Ellie's Avatar
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    Unfortunately not in your jurisdiction Steve. My GP, a personal friend, has always been open to trying anything (within reason) but I'm in my 11th year with ALS and too disabled now to try Edaravone.

    Maybe once it's approved by the FDA (apparently in about 6mos) doctors might be more likely to prescribe it in the UK?
    Don't give up - I wonder if you could raise awareness through local media or social media, without attracting quacks & charlatans!

    Best wishes,
    Ellie.
    ​Diagnosed 03/2007. Limb onset (arm) sporadic ALS/MND.

  4. #14
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    No problem Ellie,
    11 years is very good going. Hope your progression slows down to give you several more years.

    My neurologist suggests that there is a lot of research going on at the moment, and that a breakthrough, although not certain, is possible.

    Positive thinking is surely a good thing.

    Where do you live? I live in London.

    Steve

  5. #15
    Forum Member Ellie's Avatar
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    I'm in Dublin.

    Yep, my Neuro is heavily involved in research and there are breakthroughs coming thick & fast.

    Pity the pharmas & regulators are so slow. Here's to gene therapy!

    take care,
    Ellie.
    ​Diagnosed 03/2007. Limb onset (arm) sporadic ALS/MND.

  6. #16
    Forum Member Onein400's Avatar
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    Quote Originally Posted by Ellie View Post
    I'm in Dublin.

    Yep, my Neuro is heavily involved in research and there are breakthroughs coming thick & fast.

    Pity the pharmas & regulators are so slow. Here's to gene therapy!

    take care,
    Ellie.
    The reality is that we have NO idea of the effectiveness of evadarone. No real data is published and this is why the FDA are reviewing. If approved (and it's only if), we could then lobby NICE. My understanding re Treeway (Dutch company) is that they are looking at a pill form, but it is not developed at all. It may be in trial, so you could get involved with that.

    Just make sure you are taking Riluzole (if you are able to).

    Gene therapy is the way forward. Stem cell therapies just don't make sense to me for the nature of the disease.

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