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Thread: Mirocals

  1. #1
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    Mirocals

    Has anyone heard of this drug as I am being put forward for a clinical trial.
    Best wishes Jerry

  2. #2
    Forum Member Barry52's Avatar
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    Hi Jerry,

    You will find information about this trial via this MNDA link.

    Regards
    Barry
    https://www.mndassociation.org/wp-co...A-MIROCALS.pdf
    Life is a journey, not a destination.

  3. #3
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    Hi Jerry,

    My husband has been on this trial since last year you will have to go to the hospital and do some breathing, blood test's etc. to have a base line then if you meet the criteria you will go on the trial 5 injections once a month, they are very good and have looked after my husband really well, good luck,

    regards Mandy

  4. #4
    Forum Member Ellie's Avatar
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    Thanks for that info Mandy. May I ask...

    How is your husband tolerating the drug?

    Does he think the trial is worthwhile for him personally?

    I wish him all the best.

    Love Ellie.
    ​Diagnosed 03/2007. Limb onset (arm) sporadic ALS/MND.

  5. #5
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    Hi Ellie,

    The trial is randomised with a 50/50 chance of getting the medicine or the placebo, he gets reactions to each injection site and is ill with flu like symptoms right from the start so with the medical staff we know he is on the medicine, he has a slower type of early onset bulbar mnd but has not shown any major decline since starting apart from his voice which has nearly gone but was going before the start, for my husband he feels it is worthwhile and though he does not like feeling unwell for a few days each month he is hoping it helps them find some other medicine that might help others in the future.

    regards Mandy

  6. #6
    Forum Member Ellie's Avatar
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    Sounds positive Mandy.

    Good on him - and hope it benefits him in the long term x.
    ​Diagnosed 03/2007. Limb onset (arm) sporadic ALS/MND.

  7. #7
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    My husband is also on the trial. He gets a skin reaction and his arm is sore and aches after each injection, but he never feels unwell. He has only had 1 set of injections so far and I think he has declined since he started the trial, but we will keep going as long as he is able as there is not much else out there. He is on Riluzole as part of the trial and I definitely think that hasn't help. I am not sure how long it would take for the Mirocals drug to work - unfortunately that seems to a problem with drug trials, everything is a bit 'cloak and dagger' and no information is forthcoming. Also there is a 50% chance Tony is on the placebo.

  8. #8
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    Thanks Mandy

  9. #9
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    Thanks Barry

  10. #10
    Forum Member Barry52's Avatar
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    One of my contacts is just back from a conference about this drug and she posted the following.

    “Back from Milan. Excellent meeting for the Mirocals trial. Great team of researchers and IL2 looks promising. Hope it translates into a drug that really does make a difference. Still recruiting but have to be newly diagnosed and before starting to take Riluzole. As well as looking at IL-2 (interleukin 2) study also looking at how Riluzole works. Gilbert Bensimon ,who is leading study with Nigel Leigh, led the original Riluzole study which showed it improved survival.Strong team of neurologists, immunologists and neuroscientists taking part”.

    Barry
    Life is a journey, not a destination.

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