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Thread: Has anyone used Edaravone?

  1. #1
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    Has anyone used Edaravone?

    Hi all, Iím new to the forum and seem to be experiencing some technical difficulties so thought I would start a new thread about Edaravone.

    Has anyone out there had any direct experience with the drug? I know you can obtain it but Iím interested in how it would be administered and what success (if any) people have experienced.

    Many thanks
    Last edited by Kienstra; 25th February 2018 at 20:38. Reason: Privacy

  2. #2
    Forum Member Ellie's Avatar
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    You are better off reading existing threads rather than asking people to retype all the info already on these threads. Or use the search function.

    Existing threads include:

    http://forum.mndassociation.org/show...ight=edaravone

    http://forum.mndassociation.org/show...-for-Edaravone


    Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.

  3. #3
    Forum Member Terry's Avatar
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    Hi Felicity;

    Sorry to hear that a family member has recently been diagnosed with Mnd.

    I'm not sure if anyone here has tried it, I thought that there was. If you search "Edaravone" in the box at the top right side of this page you should find all the threads on the subject. Please post on that thread if it is of use.

    If you don't find anything then come back and post here, we might have other ideas

    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 keep 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.

  4. #4
    Forum Member Ellie's Avatar
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    I should add that as the drug was only recently approved in the US, and people have only started taking it or negotiating with their insurance company for its approval, so it's still early days for feedback, but as numerous people are/will be taking Edaravone, in time we shall see how effective it is in practice.

    That's why the branded Radicut is currently in short supply, but generic Edaravone is available.

    Good luck.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.

  5. #5
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    Thanks both, the research continues

  6. #6
    Forum Member Barry52's Avatar
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    Here is a recent post from the Boston seminar.

    Barry

    Radicava and Its Decisive Phase 3 Trial Among Presentations at ALS/MND Meeting This Weekend


    alsnewstoday.com/2017/12/07/mitsubishi-tanabe-pharma-america-to-present-data-on-radicava-edaravone-at- alsmnd-summit-in-boston/
    Carolina Henriques December 7, 2017
    Additional data on Radicava (edaravone) and the clinical trial that led to its approval to treat amyotrophic lateral sclerosis (ALS) will be presented in oral and poster presentations at the 28th International Symposium on ALS/MND that opens in Boston on Friday.
    Mitsubishi Tanabe Pharma America announced that its one oral presentation, highlighting the importance of patient selection in clinical trials and good trial design in improving a study’s outcomes and speed, will take place on Friday, Dec. 8.
    The presentation is titled “Towards More Efficient Clinical Trial Designs in ALS: Lessons from the Edaravone Development Program.”
    “In a pooled, post-hoc exploration of individuals who met the inclusion criteria for MCI186-19 [Phase 3 trial] in the overall edaravone development program, advantages versus placebo may be evident as early as the first cycle (28 days) of therapy,” Joseph Palumbo, MD, the company’s vice president who will give the presentation, said in a press release. “We also hope to clearly show the results seen among ... individuals with steady linear progression in the edaravone development program are generalizable to the larger population of those diagnosed with ALS.”
    Radicava’s pivotal Phase 3 clinical study (NCT01492686), conducted in Japan, assessed the effectiveness of the treatment at six months, using the ALS Functioning Rating Scale Revised (ALSFRS-R), a tool to measure the patients’ ability to perform daily activities.
    To better evaluate changes in functional abilities — those clinically and statistically meaningful — with the trial’s 24-week treatment period, researchers wrote inclusion criteria that favored enrollment of patients with higher functional abilities but relatively rapid progression rates. “If patients with limited function had been entered into the trial, it would have been difficult to evaluate change in function,” MT Pharma America states in the release.
    Life is a journey, not a destination.

  7. #7
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    For our situation it seems like a good option but we still need a prescription to buy it. Has anyone achieved this?

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    Where do you live Kienstra? Edaravone is not available on prescription in the UK as it is not a registered drug here. I did find a supplier of Edaravone in Holland but it was very expensive and I have no idea whether it can be brought into the UK legally. There are considerable additional costs too as a doctor/nurse is needed to administer the infusion on 10-14 days of each month.
    Whether Edaravone is effective is unclear. Tt is not a cure but purported to slow down progression. I think some doctors were taken by surprise when it was registered for use in the USA. It originated fro Japan. Let's hope a new drug appears soon that will help us all. Ann X

  9. #9
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    Thanks Ann, yes all we hope for is a drug that truly fight this horrible disease. Xx

  10. #10
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    Radacava

    Quote Originally Posted by Annb View Post
    Where do you live Kienstra? Edaravone is not available on prescription in the UK as it is not a registered drug here. I did find a supplier of Edaravone in Holland but it was very expensive and I have no idea whether it can be brought into the UK legally. There are considerable additional costs too as a doctor/nurse is needed to administer the infusion on 10-14 days of each month.
    Whether Edaravone is effective is unclear. Tt is not a cure but purported to slow down progression. I think some doctors were taken by surprise when it was registered for use in the USA. It originated fro Japan. Let's hope a new drug appears soon that will help us all. Ann X
    Radacava is now available in India and for the prescribed dosage of 60mg per day @ $280 for 15 days per month. Not cheap.
    Regards Jerry

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