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Thread: Ibudilast

  1. #1
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    Ibudilast

    This has only just come to my attention but others may know more about Ibudilast, a drug approved in Japan? Now at a stage 3 trial in USA I believe, and I've only discovered this by chance today!

  2. #2
    Forum Member Kayleigh's Avatar
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    Hi Olivia,

    There is a recent article about it in ALS News today:-

    https://alsnewstoday.com/2019/04/17/...-als-patients/

    Best wishes
    Kayleigh

  3. #3
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    Thank you

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    Hi Olivia, I started taking it before I came to the UK and have started again now but I’ll need to find something to counter the nausea first. Possibly just me, but taking morning and night I constantly feel like throwing up.
    Regards Jerry

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    Thanks Jerry. The nausea must be awful, but do you feel the medication itself has slowed your condition or improved things for you?
    Regards
    Olivia

  6. #6
    Forum Member nunhead_man's Avatar
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    Hi Olivia,

    Thank you - this was featured in a recent webcasts from the US - I think it is a US only study.

    Note that it is a PDE4 and PDE10 enzymes and the MIF protein inhibitor.

    Had to smile about your question about slowing the condition - my mum always asks me if riluzole, has had any effect on me and of course I do not know because I do not have another 1 of me that is not taking it :-)

    Warmly

    Andy
    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

  7. #7
    Forum Member Gillette's Avatar
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    Z
    Quote Originally Posted by nunhead_man View Post
    Had to smile about your question about slowing the condition - my mum always asks me if riluzole, has had any effect on me and of course I do not know because I do not have another 1 of me that is not taking it :-)

    Warmly

    Andy
    I am on a double blind drug trial for a different drug. I have discussed it with the research team and said that I hope I am on the placebo as my MND is moving on quite rapidly. I am also taking Riluzole/Rilutek.
    Dina


    Trying to keep positive, but not always managing.

  8. #8
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    Hi Andy and Dina
    Yes they are very good points, how can we know what impact something is, or is not having, because we are all so different. I sometimes wonder if there are lots of subtle variants of this illness, or protective factors that some of us have and don't even know about. I've had this for 7 years, don't take Riluzole, do take lots of antioxidants and copper 'off the shelf', who knows why one person has a different trajectory to another. I am very positive, but then it is easier for me to do that because I am not as bad as so many, although I can hardly walk of course.
    Stay defiant.

    Olivia.

  9. #9
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    Hi Olivia, as Andy says you just don’t know as we’re all different and I haven’t been regular with it due to the nausea. I was also told by Ellie that you may need to be taking Riluzole also which I am not and 100 mg a day. I was taking 60mg reduced to 40mg. Let me get back to you all.
    I am starting it again from Monday.
    Best wishes Jerry

  10. #10
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    Hi Dina, I hope so too. I seem to be deteriorating quite rapidly too. Stay positive though the words seem so empty to me from people who aren’t in the loop xxx Jerry

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