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    Mandymc
    Forum Member

  • Mandymc
    replied
    Hi Jerry it's Dave my husband that was taking it he became ill with a bug and stopped taking it as it made him breathless and has not gone back on it. Not sure he is going to go back on it as he has gone down hill a bit since the bug and picked up one or two other bugs that have been going around. He did find to start on a low dose and gradually increase it worked better, sorry I can't help anymore than that,
    Mandy

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  • Jer788
    Forum Member

  • Jer788
    replied
    Hi Mandy, how is the Ibudilast going. I’m having nausea problems again.
    Regards Jerry

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  • Jer788
    Forum Member

  • Jer788
    replied
    Originally posted by Ellie View Post
    I'm sorry to hear that Jerry.

    Do you know on what basis the Edaravone was impounded? I'd ask whomever it takes to get it released - I thought one can import a 3 month supply of meds for personal use if they're legal?

    Obviously neither your GP nor Neurologist will write a script for the drug so you can get it from the Netherlands, albeit at a higher price and maybe only until 31st October, even though you tell them you've benefitted from it in the past?

    Love Ellie.
    Hi Ellie, no I don’t know the reason yet only that they’ve seized it and have asked if HMRC have been in touch. Customs are funny. Last month they charged me £25 import duty on my Ibudilast but this month nothing 😜
    Hope you’re doing ok.
    Luv Jerry x

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  • Ellie
    Forum Member

  • Ellie
    replied
    I'm sorry to hear that Jerry.

    Do you know on what basis the Edaravone was impounded? I'd ask whomever it takes to get it released - I thought one can import a 3 month supply of meds for personal use if they're legal?

    Obviously neither your GP nor Neurologist will write a script for the drug so you can get it from the Netherlands, albeit at a higher price and maybe only until 31st October, even though you tell them you've benefitted from it in the past?

    Love Ellie.

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  • Jer788
    Forum Member

  • Jer788
    replied
    Originally posted by Ellie View Post
    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.
    Hi Ellie, I’ve been on the Ibudilast now for about 3 months with Riluzole and I can’t see any benefits. I am still deteriorating quite rapidly but as other things we all take it’s difficult to evaluate. I ordered Edaravone again as I felt this was beneficial but it has been seized by customs 3 weeks ago and am awaiting an update. I am considering contacting my MP who has been supportive in the past.
    Jerry xxx

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  • Lynne K
    Forum Member

  • Lynne K
    replied
    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

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  • Jer788
    Forum Member

  • Jer788
    replied
    Yes I do. Sorry for the late reply.
    Br Jerry x

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  • Vivek
    Forum Member

  • Vivek
    replied
    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

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  • Ellie
    Forum Member

  • Ellie
    replied
    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.

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  • Mandy124
    Forum Member

  • Mandy124
    replied
    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!

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  • Lynne K
    Forum Member

  • Lynne K
    replied
    Hi Dave, please let us know how you go on with your Ibudilast. Thanks, Lynne

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  • Mandy124
    Forum Member

  • Mandy124
    replied
    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

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  • Vivek
    Forum Member

  • Vivek
    replied
    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

    Leave a comment:

  • Ellie
    Forum Member

  • Ellie
    replied
    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.

    Leave a comment:

  • Gillette
    Forum Member

  • Gillette
    replied
    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.

    Leave a comment:

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