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Thread: Drugs etc

  1. #11
    Forum Member Ellie's Avatar
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    Hi Lisa,

    It's YOUR decision whether or not to take Riluzole - the only drug approved in the UK for ALS - not someone's who isn't living with ALS...

    Most people on the Forum take it, some don't due to adverse side effects, but whatever you decide, do it for the right reason.

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.

  2. #12
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    HI Ellie, how do you mean the right reason? I tend to experience side effects from drugs quite strongly. The fact sheet says there's little effect on progression? Hmm,I'm continuing to read around it anyway..I do appreciate there are no other drugs licensed for mnd in the UK x
    https://www.thelancet.com/journals/l...91-7/fulltext#
    I should clarify too, he did make it clear from the start that he's happy to prescribe it if I'd like to.
    Last edited by Catsparkle; 27th November 2018 at 00:07.

  3. #13
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    Hello
    So it is the cost of Edaravone and the procedure for the hospitals. In real terms I would cost nothing compared to hospital admissions.
    Chris

  4. #14
    Forum Member Ellie's Avatar
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    Hi Lisa,

    By "for the right reason" I mean it being your decision and not that of your Neurologist.

    Data from real world experience shows a much greater added survival, particularly when Riluzole is started early, and real world experience trumps clinical trial data for me! My clinic is pro Riluzole because of its own data but obvs we have a choice.

    If your interested, see https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6053101/

    The more balanced info you have should make for a more informed decision.

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.

  5. #15
    Forum Member Ellie's Avatar
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    Quote Originally Posted by Chrisp View Post
    Hello
    So it is the cost of Edaravone and the procedure for the hospitals. In real terms I would cost nothing compared to hospital admissions.
    Chris

    Chris, apart from health services not seeing the bigger picture...

    Hospital admissions for those with ALS tend to be mainly for feeding tubes and pneumonia, which Edaravone even at its best, wouldn't eliminate.

    The data on Edaravone suggests fewer than 10% would derive actual benefit from it but the cohort of newly diagnosed people with ALS is small, so that's a plus.

    In the US where it is available, paid for by insurance companies, those companies impose criteria on eligibility e.g. date since diagnosis, breathing scores etc. before approving Edaravone for their client.

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.

  6. #16
    Forum Member TIANDB's Avatar
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    Quote Originally Posted by Ellie View Post
    Hi Lisa,

    By "for the right reason" I mean it being your decision and not that of your Neurologist.

    Data from real world experience shows a much greater added survival, particularly when Riluzole is started early, and real world experience trumps clinical trial data for me! My clinic is pro Riluzole because of its own data but obvs we have a choice.

    If your interested, see https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6053101/

    The more balanced info you have should make for a more informed decision.

    Love Ellie.
    Hope you are not trying to say Riluzole is some kind of miracle drug. It is not and benefits are slight it is known and stated to possibly extend time to tracheostomy by 90 days maybe it seems to work better than that to some. PLM reports are usually right, no one sings and dances about Riluzole or even Edaravone ( Radicava) and how they even got through trials as General ALS treatments is beyond me.
    Independent patient reports on PLM by May 2017:

    Evaluations of efficacy → Major Moderate Slight None Cannot tell
    Riluzole 3% 6% 8% 15% 68% So 81% Slight or no Benefit.
    Edaravone 0% 17% 18% 20% 45% So 83% Slight or no benefit.

    https://www.patientslikeme.com/treat...ion_id=9&id=11

    https://www.patientslikeme.com/treat..._id=9&id=25456

  7. #17
    Forum Member Ellie's Avatar
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    No Kevin, I am not trying to say anything of the sort.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.

  8. #18
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    Thanks Ellie. Totally agree that real world info is very useful

  9. #19
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    Thankyou Ellie, I'll have a good look into that. My uncle is a research professor into MS, so I'll get him to help me scan through the published research as well. The article you've linked to is the first I've seen that's positive about riluzole, so that's really helpful. xx

  10. #20
    Forum Member Kayleigh's Avatar
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    Hello Ellie and Lisa,

    Ellie - thank you for sharing the real world article about Riluzole. I had not seen this article before and found it very interesting.

    Lisa - It is a very personal decision about whether you take Riluzole or not. I am glad that you are taking as much time as you need to research Riluzole so that you can make an informed decision - whatever you decide, you will have peace of mind that you are doing what is right for you.

    Love and best wishes
    Kayleigh x
    Last edited by Kayleigh; 28th November 2018 at 16:46.
    We are a fabulous forum family - the precious bond we all share is powerful and strong!

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