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Thread: Ibudilast

  1. #21
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    Quote 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

  2. #22
    Forum Member Ellie's Avatar
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    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.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  3. #23
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    Quote 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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