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Thread: Ibudilast

  1. #11
    Forum Member Gillette's Avatar
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    Hi Jer778,

    Do you constantly feel as though you are playing catch-up because of the rate of deterioration? I think that is one of the most difficult things to cope with, psychologically.
    Dina


    Trying to keep positive, but not always managing.

  2. #12
    Forum Member Ellie's Avatar
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    Jerry, the clinical trials which showed positive outcomes for people with ALS were, and are, based on taking Ibudilast as an add-on therapy to Riluzole. And that's the basis of their patent, currently being considered by the US authorities.

    Does your Neuro have to initially prescribe it or can your GP prescribe it? IDK what the UK protocol is, but I know someone will jump in to clarify it if you aren't quite sure.

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  3. #13
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    Dear pals friends
    There was a research showing benefits of ibudilast with riluzole.
    Kindly advise how to get ibudilast in the uk.
    Best Wishes
    Vivek

  4. #14
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    Hi Vivek,
    Quite simply there is no easy way to get Ibudilast in the UK
    There is a drug charity in Holland that will supply it if you get a DR to write a prescription, mu Neuro refuses to do so as its not licensed for use in the UK.
    It can be bought directly from Japan at a number of sites, I have just ordered some at a cost of 700 for 1000 tablets
    probably import duties and Vat to pay yet so its not cheap!
    Dave

  5. #15
    Forum Member Lynne K's Avatar
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    Hi Dave, please let us know how you go on with your Ibudilast. Thanks, Lynne
    ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
    I'm staying positive and taking each day as it comes.

  6. #16
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    Hi All,
    Ibudilast tablets arrived from Japan this week without a problem at a cost of 650 for 1000 10mg tablets.
    At 60 mg a day I reckon thats almost 6 months worth so cost for a year is around 1400 or just over 100 a month.
    60 mg combined with Riluzole was the doseage for the phase 2 trial where there were some promising results.
    The current trial has upped the dose to 100mg a day.
    I see the main side effect as being nausea so I've decided to gradually introduce the tablets and get to 60mg over a week or so and see how I cope, fingers crossed!

  7. #17
    Forum Member Ellie's Avatar
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    Hi Mandy / Mr Mandy?

    Really hope it works out well for you and preliminary results did show Ibudilast showed more promise in bulbar-onset people, of which you are one.

    Best of luck getting to grips with the nausea - I wonder if a PPI to line your stomach would help? Maybe try Kwells motion sickness tabs (check re long-term use) or the traditional remedy of ginger? I know the anti-nausea prescribed meds are only meant for short-term use but your GP may have a solution.

    Best wishes.

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  8. #18
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    Dear Mandy

    So pleased for you and hope wish n pray this suits you well and that it’s effective
    The literature does support use of both medicines. Pl keep us posted

    BW

    vivek

  9. #19
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    Yes I do. Sorry for the late reply.
    Br Jerry x

  10. #20
    Forum Member Lynne K's Avatar
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    Ibudilast is now being put on a 2b-3 trial according to ALS News. They are recruiting now for people that haven't had their MND diagnosis for more than 18 months. Any of you that are in the US please read, and others for your interest read on. Heres the link to the article:
    7https://alsnewstoday.com/2019/06/07/enrollment-starting-soon-in-phase-2b-3-trial-of-ibudilast-for-als/

    Lynne
    ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
    I'm staying positive and taking each day as it comes.

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