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Thread: ropinirole hydrochloride

  1. #11
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    I read and shared the article on this but have been refused this drug for my husband on the grounds that it is not licenced for MND. Fru

  2. #12
    Forum Member Ellie's Avatar
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    Fru, it's licenced for use in RLS - Restless Leg Syndrome - which some people with ALS develop.

    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
    Forum Member TIANDB's Avatar
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    Hi Fru.
    If it was your MND consultant that refused try your Doctor or vice versa. I had to talk my Doctor into it well slurr him into it ha.
    It is not an expensive drug and you start on a really low dosage 0.25mg and slowly build up. My legs are easier to manage while in bed since taking but early days as yet. I am just up to 2mg taken before sleep that is the recommended for restless leg although you can go up to 4mg ( parkinsons users can go up to 24mg ). Take care.

  4. #14
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    Thanks TIANDB, I am seeing my GP in two weeks time (that's the wait here) and I will have a go at getting then. Fru xx

  5. #15
    Forum Member TIANDB's Avatar
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    Most welcome. I have an e-mail contact with my Doctors due to my voice issues and confined in my first floor apartment. I seem to get quicker service that way although the only medication I am on from the Doctor is Ropinirole ( 13 Days )
    Best Luck.

  6. #16
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    Hi TIANDB,
    No problem getting Ropinirole and starting low. Got one month at 0.25 and I am to get in touch in two weeks. How can we tell if this is any good? or whether it is interacting with any other drugs currently being taken?
    Fru x

  7. #17
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    Just letting you know that 0.25 is well tolerated and the dose has now been increased to 0.5 from today. Nothing spectacular to report apart from that I have asked someone I know to check out the Japanese professor who wrote the paper. I'll post the info on ropinirole later.
    Fru xx

  8. #18
    Forum Member Terry's Avatar
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    Hi Fru,

    I hope that it helps in anyway. All the best.

    Love Terry

    PS, apart from growing horns that I saw at the Cambridge Christmas party

  9. #19
    Forum Member Ellie's Avatar
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    Great he is tolerating it so far Fru, hope it continues as the dose increases xx
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  10. #20
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    Thank you for your support. As promised earlier here is some further reading for anyone interested to follow on from the first post on this thread xx

    https://www.webmd.com/drugs/2/drug-4...e-oral/details
    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2542495/
    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2685238/
    https://clinicaltrials.gov/ct2/show/NCT00329602

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