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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.

  7. #17
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    Hi All,
    I have been taking Edaravone/Radicut for the past 4 days in Swiss Medica in Moscow. They are giving me two infusions a day each an hour long with 30mg Edaravone/Radicut in each. I read in the Mitsubishi Tanabe Pharma documentation that it should be 1 infusion per day of 60mg Edaravone/Radicut.
    Has anyone else taken Edaravone/Radicut and what was your dosage regime?
    Thanks,
    Steve

  8. #18
    Forum Member Terry's Avatar
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    Hi Steve;

    All the best for the treatment, keep us informed and how is Moscow?

    No clue about the dosage.

    Love Terry
    TB once said that "The forum is still the best source for friendship and information."

    It will only remain so if new people post and keeps us updated on things that work or don't work and tips.

    Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

  9. #19
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    Hi Steve, how is your progress? Good luck and really hope it helps!

  10. #20
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    Hi, Yes it went well and I noticed improvements in my swallowing and some speech improvement too. Don't know how long it will last though. Not sure if I will be having more treatment as yet.
    Thanks, Steve

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