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Thread: TUDCA-ALS Clinical Trial Is Recruiting

  1. #11
    Forum Member Kayleigh's Avatar
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    Hi Lynne

    I can understand why they would want people to have a score of 4 for swallowing (because they obviously don't want a patient to choke on the tablets or have any discomfort while swallowing them) but perhaps check with your neurologistist whether you have been scored a 3 or 4 so far?

    I found an online version of the scale and it says a score of 3 is 'early eating problems - occasional choking' (I can't remember if this is the version currently used by the NHS though?):-

    http://https://www.neurotoolkit.com/alsfrs-r/

    I hope all goes well at your next hospital appointment.

    Love
    Kayleigh

  2. #12
    Forum Member Lynne K's Avatar
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    Thanks Kayleigh x
    ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
    I'm staying positive and taking each day as it comes.

  3. #13
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    do you know which tudca brand they are using at the trial ?

    is it a supplement or a drug ?

  4. #14
    Forum Member Kayleigh's Avatar
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    Hello Timm

    The EU Clinical Trials Register has got the Trade Name of the drug listed as 'Taurolite':-

    http://https://www.clinicaltrialsregister.eu/ctr-search/trial/2018-002722-22/GB

    The purpose of the trial is to find out if it can be used as an effective treatment in addition to Riluzole.

    Further information about the trial:-
    http://https://www.mndassociation.org/research/get-involved-in-research/take-part-in-research/tudca-clinical-trial/

    Best wishes
    Kayleigh

  5. #15
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    thanks kayleigh

    what would be the possible outcomes of this drug do you think ?

  6. #16
    Forum Member Kayleigh's Avatar
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    Hi Timm,

    An initial pilot study of 60 patients showed some promising results (TUDCA significantly delayed the degeneration of motor neurons by about one third) - and in light of this, a possible outcome of the trial could be that taking TUDCA in addition to Riluzole will slow down progression of the disease more effectively than taking Riluzole alone.

    Further details are on the following webpage:-

    http://https://www.tudca.eu/about/

    Best wishes
    Kayleigh
    Last edited by Kayleigh; 23rd January 2020 at 05:00.

  7. #17
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    Spoke to MND Nurse , Your Criteria list is Wrong . The Criteria given by her and her team bears no resemblence to the one you have posted.

  8. #18

    Trials criteria

    Quote Originally Posted by billy106 View Post
    Spoke to MND Nurse , Your Criteria list is Wrong . The Criteria given by her and her team bears no resemblence to the one you have posted.
    Then please post the correct list

    Doug

  9. #19
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    what i understand from the trial website is that they first enrolled a patient in jan 2019.


    it's already been more than 1 year . haven't they got at least a preliminary result yet ?

  10. #20
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    Hi all,
    As with all clinical trials, the end timescale is always going to be longer as a rule due to not getting the numbers required, i'm on the mirocals trial and up to january they only had just over 100 of the near 250 they want.
    With regards to TUDCA, although the trial has criteria to be involved with it, they are testing a common supplement available to anyone! This is a liver detox supplement used for many years by bodybuilders and other sporting peolle in general who have taken other substances such as steroids ect which can be toxic and harmful on the liver and wider body as a whole. This supplement is safe, pretty cheap comparatively and, more importantly if you go online and read what it actually does inside our bodies you would be forgiven for thinking that this was made for treating MND. The clinical trial is for4 250mg capsules to be taken 10-15 mins after meals twice daily (8 capsules per day).
    Whether you qualify under the stipulations of the drug corporation or not, any one of us can take this ourselves!!! 💪

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