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Thread: Edaravone/Radicut

  1. #1
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    Edaravone/Radicut

    Hi all,
    On 9 January 2017, I was diagnosed with bulbar onset lower motor neurone predominant ALS.

    I was wondering if any forum users have experience taking Edaravone, which is also called Radicut.

    I would like to try this drug, but need a prescription and administration, as it is taken intravenously.

    I live in Wimbledon, London SW19 8AJ.

    Hope somebody can help.

    Thanks, Steve

  2. #2
    Forum Member Barry52's Avatar
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    Hello and welcome Steve. I am sorry to hear of your diagnosis and I understand your desperation to find anything that will halt or cure this hideous disease. We all go through that stage of research and hope after coming to terms with the reality of what lies ahead.

    I would advise caution with regard to stem cell treatment. I have been to several seminars where leading medical professionals doubt the efficacy of this treatment and the small sample of patients involved is insufficient to suggest a cure.

    On the subject of Edavarone, I believe this gives us hope as it is already licensed in Japan where it was developed and it is at stage 3 in the US. I have listened to leading medics present this drug as hopeful means of slowing down progression of MND but as ever they follow procedure and wait for the licensing bodies to approve it. Time is not on our side and many of us would pay for a drug that extends our lives. Your suggestion of the GMC route makes sense if you can find a medic who will comply.

    Best wishes
    Barry
    Life is a journey, not a destination.

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    Thanks Barry,
    I know somebody who is having very good results with Edaravone. Hopefully I will find a way to receive this drug here in the UK. There is a clinic in Moscow that will administer, but repeatedly returning for treatment more than once a month does not make it viable, emotionally of financially.
    Fingers crossed.
    Steve

  4. #4
    Forum Member Terry's Avatar
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    Hi Steve and welcome to the forum;

    Sorry to hear of your recent diagnoses and I hope that you can get access to some newish treatment very soon.

    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.

  5. #5
    Forum Member Ellie's Avatar
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    Hi Steve,

    Have you asked your GP or Neurologist if they would prescribe and administer the drug if you organised importation & paid for it?

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

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    Hi Ellie,
    Yes, both refuse. I think maybe because they are NHS and it isn't licensed in the UK. The General Medical Council of the UK state that a physician can prescribe and administer an unlicensed drug if there is no similar alternative available, which there isn't in the UK. I am happy to organise importation and pay for Edaravone.

    Any help in finding a physician that can help would really be appreciated.

    Steve

  7. #7
    Forum Member Ellie's Avatar
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    Why not contact the Dutch company selling the drug to see if they can help with a prescribing doctor? You can't be the only person in the UK seeking Edaravone!

    Or a private Neurologist/Doctor maybe?

    Steve, if it were me 10 years ago, I'd want the drug too and do everything to find a way of getting it.

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

  8. #8
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    Hi Ellie,
    I have asked the dutch company, and am waiting on a reply. I have already asked private doctors, but still have a few to get through.

    Where there's a will . . . perhaps.

    Steve

  9. #9
    Forum Member Barry52's Avatar
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    Hi Steve,

    Check out this blog which refers to Edavarone and Masitinib. http://www.blogs.oregonstate.edu and search under Linus Pauling Institute.

    Barry
    Life is a journey, not a destination.

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    Thanks Barry.

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