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Thread: Has anyone used Edaravone?

  1. #11
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    I have ordered from India for $500 including shipping but will put it through a lab before use.
    Here's hoping !
    Jerry



    Quote Originally Posted by Kienstra View Post
    Hi all, I’m 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 I’m interested in how it would be administered and what success (if any) people have experienced.

    Many thanks

  2. #12
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    Hello
    The Italian NHS are prescribing it to ALS patients
    Chris

  3. #13
    Forum Member TIANDB's Avatar
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    Hi jer78o. I hope it will have a good effect and it is the correct medication. I looked into the original testing of Edaravone and was surprised that it was given acceptance for all ALS patients, the testing showed efficacy in a small group of quite progressed patients after discarding those upon which it had no or a few slight negative effect. 7% ?was the estimated of those with ALS that can benefit. A shame really we do not know who that percentage are Fals ? Pals ? C9 ? Sod 1 ? blah blah. Like I say I do hope it will benefit you and it the true product.
    https://www.patientslikeme.com/treatments/show/25456
    On looking at the 57 evaluations on PLM above I think I saw about 9 of 40 patients showed some benefit but many failed to update any records and have not been seen on PLM for many months which is ominous and sad but this is ALS for you.


    Take care.. TIANDB
    Last edited by TIANDB; 21st August 2018 at 22:08. Reason: ADD

  4. #14
    Forum Member nunhead_man's Avatar
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    Good morning,

    We had Dr Brian Dickie Ė Director of Research at the Association at our (South London group) coffee afternoon on Sunday 12th August 2018 and he was asked about this .....

    Quote Originally Posted by TIANDB View Post
    I looked into the original testing of Edaravone ................. TIANDB
    His view was that the effect of the drug was so small that it was not worth worrying about especially given that the results came from a small sample with no testing of underlying cause of MND as in genetic variance et cetera
    Warmly


    Andy

    ​Diagnosed 03/2015. Limb onset (arm) sporadic ALS/MND.
    MND hitting - now 50% left arm and 90% right arm, plus other bits including left shoulder

  5. #15
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    *View ALS Worldwide Press Release on the FDA approval of Edaravone.

    The anticipated FDA approval for Edaravone, also known as Radicava, has arrived a full month earlier than expected. On Friday afternoon, May 5, 2017, FDA authorization was granted to Mitsubishi Tanabe Pharma America, Inc. to manufacture and distribute this important medication that has already provided systemic benefit to many with ALS in Japan, India, and to smaller patient groups in at least 16 other countries, including the US.

    At ALS Worldwide, we have had firsthand experience providing compassionate use of Edaravone to a group of ALS patients since August 2016. Because of the positive trial results shared by Mitsubishi Tanabe at that time, we felt it important to enable this medication, on a compassionate use basis, to those who sought Edaravone and were able to manage the challenges Edaravone encompasses. Some US and EU patients traveled individually to Japan to bring back a several-month supply for themselves. For others, we traveled abroad to import this medication for its compassionate use trial and benefits in the US and other countries.

    We learned that the majority of those who began its use, now for as long as 10 months, have achieved benefits that outweigh some of the challenges involved in its administration. Edaravone, or Radicava, requires a PICC line or Port-A-Cath for daily intravenous (IV) injection and can take up to an hour for the daily infusion to be completed. For most, this was achieved in-home and soon became an acceptable part of their daily routine.

    22 years after the introduction of Rilutek (generic name riluzole), we appear to have a new systemic treatment that offers important benefits to the ALS patient community. Radicava (as it is now named in the United States) is expected to be available to patients and their doctors as early as August 2017, but may be up to three months later.

    In months past, ALS Worldwide has responded only to specific patient inquiries for individual compassionate usage of Edaravone, funded in whole or in part by patients and families themselves. Our role included sourcing and importing the medication, confirming its authenticity and safety, continuous monitoring of usage, and helping develop local medical oversight, administration of Edaravone, and correlation of patient usage and results. ALS Worldwide has provided like services for other trial medications under the supervision of our medical and scientific advisors, to whom we are deeply indebted. This is part of our ongoing effort to support the ALS patient community, as we have done since 2002.

    What can you do now that Edaravone has been approved?
    1.In order to make an informed decision about the usage of Radicava, learn what is involved in procuring a PICC line or Port-A-Cath by reviewing this document: Stanford Hospital Patient Information
    2.Notify your local pharmacy that you wish to be informed as soon as Radicava becomes available
    3.Contact your insurance company concerning their coverage for Radicava
    4.Discuss the installation of the PICC line or Port-A-Cath with your local physician
    .

  6. #16
    Forum Member TIANDB's Avatar
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    Add this Radicava thread as Edaravone/Radicut/Radicava..

    http://forum.mndassociation.org/show...-with-RADICAVA

  7. #17
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    Me too thanks, I will post on any effects be they positive or negative.
    Luv Jerry

  8. #18
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    Yes I will Marge thanks x

  9. #19
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    Well I'm down in the dumps today. The Thai customs have refused to allow my Edaravone through. Maybe my fault as I ordered 3 months supply. Looks like I'm off to India!!
    Best Jerry

  10. #20
    Forum Member Terry's Avatar
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    Hi Jerry;

    What a hit for you, I didn't think that Thai customs would have any problem with that. Is there no appealing?

    Wish you luck, Terry

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