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Thread: Edaravone courier from Japan

  1. #1
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    Edaravone courier from Japan

    Dears,

    Unfortunately our relative was diagnosed with ALS recently and we have been told by doctor to get medicine edaravone which is not registered in Russia. Therefore there is no legit retailer of drug in Russia. I was looking for different options to purchase it via online but nearly got into scammers hands. Then we heard about clinic in Japan called Yoshino Neurology Clinic where they treat patients in their own facility and help to send medicine with help of middle man to elsewhere. I would be grateful to anyone who can confirms to had bought medicine same way. My concerns are that it cost a lot but even more important to avoid counterfeit drug which can hurt even more. While looking other options I have received generic Aravon from India that was bough for me by close people. I am curious also if anyone knows if this medicine as good as original from Japan? I will be glad if you can share your thoughts on this matter.

    Wishing good health to everyone,
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  2. #2
    Forum Member nunhead_man's Avatar
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    Good afternoon Musa

    I'm sure somebody will be along in a moment with more knowledge than I have but I believe that edaravone has only a limited impact on the progression of motor neurone disease.

    Typically the only drug that is approved in the UK which is where this forum is based is riluzole which is thought to give somebody suffering with MND an extra month for every year.

    Apart from that nothing else has been proven by proper clinical trial to help I am afraid although there is lot of a work in progress
    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

    "Things turn out the best for people who make the best of the way things turn out"

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    Hello Andy,

    You are right, it may not even help him but we won't do nothing and observe how this disease is taking over.
    He was also given Rilutek pills since one month. I never thought about how bad is MND until we have family member diagnosed.
    Maybe you have heard about research work going in US and Israel where they trying to treat with stem cells patients, it is still experimental but I really hope they will find cure...
    Thank you for your reply and I wish you have improvement in your conditions.
    Keep fighting it.

    Best regards, Musa

  4. #4
    Forum Member nunhead_man's Avatar
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    Good afternoon Musa and thank you

    I have indeed heard about the stem cell research and am afraid some people seem to spend money on something that doesn't really have a chance of working very well.

    Briefly, the motor neurones are determined in embryo before birth make their connections down to the ends of your fingers on the ends of your toes et cetera and then you grow and those connections grow with you.

    So I fail to see how stem cells can help at all unless in some way they can support the motor neurones and stop them dying but there seems to be little evidence that at the moment.

    Thank you for your good wishes but I'm afraid at the moment I think that motor neurone disease is a simple one-way street albeit one with very slow traffic at the moment I am pleased to say!
    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

    "Things turn out the best for people who make the best of the way things turn out"

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    Hi Musa, I had been using the generic Edaravone from India and certainly felt it had slowed my disease progression. I understand Andy’s scepticism as my neurologist is highly sceptical and maybe my condition was psychosomatic I’m not sure. As for comparing it to the brand drug we couldn’t achieve this due to not finding a lab to do so.
    Good luck Jerry

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    Hi Musa. ALS Worldwide used to source generic edaravone from India and tested it to confirm it was the genuine drug. I have used this. Thesocialmedworks in Amsterdam source from Japan (I have also used this) and they also offer generic edaravone (more cheaply). As Jerry says it can be tested in the lab to confirm it's genuine.
    Best Robin

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    Hi Jerry,

    Thank you for your reply. I would be grateful to you if you let me know how long you were taking the generic medicine from India?
    I have seen posts on this forum from gentleman living in India who mentioned he feel some certain improvement after 64 days of taking Aravon. We will be very happy if this medicine will slow down progression even. After all everyone is praying for scientists to have better drug or treatment from MND.

    Best wishes and Good health Jerry!

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    Hey Robin

    thank you for reply! I too find the same sources like thesocialmedworks but issue that shipping to Russia is not easy.
    Finally I have asked my colleagues in India to check about medicine and they got it from pharmacy. I guess we will just fly time to time to India and carry ourselves those medicine. The option to get from japan is quite difficult as they are not allow to purchase medicine without seeing local doctor.

    Best regards, Musa

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