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TUDCA-ALS Clinical Trial Is Recruiting

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  • Timm
    replied
    no , i am saying i don't understand what you mean with this :

    "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."

    Leave a comment:


  • Donkeyboy
    replied
    Timm are you saying you couldnt get on the trial or, you can't get tudca??

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  • Timm
    replied
    Originally posted by Donkeyboy View Post
    Hi all,
    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.

    what do you mean ? sorry , i couldn't get

    Leave a comment:


  • Donkeyboy
    replied
    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!!! 💪

    Leave a comment:


  • Timm
    replied
    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 ?

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  • Doug Carpenter
    replied
    Trials criteria

    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

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  • billy106
    replied
    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.

    Leave a comment:


  • Kayleigh
    replied
    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; 23 January 2020, 05:00.

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  • Timm
    replied
    thanks kayleigh

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

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  • Kayleigh
    replied
    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

    Leave a comment:


  • Timm
    replied
    do you know which tudca brand they are using at the trial ?

    is it a supplement or a drug ?

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  • Lynne K
    replied
    Thanks Kayleigh x

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  • Kayleigh
    replied
    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

    Leave a comment:


  • Lynne K
    replied
    Kayleigh, I'm hoping that I can join the trial despite over 2 years since my diagnosis. My only concern is having to have no swallowing issues, a score of 4 on the ALSFRS-R Swallowing Sub Category. I eat whatever I want and take pills fairly easily but I couldn't say absolutely no issues. They may reject me . I have an appointment at my neurology clinic in two weeks so I'll ask about it then.

    Lynne x

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  • Kayleigh
    replied
    Many thanks for kindly letting us know about the trial Ellie.

    I won't be eligible for this trial (partly because it has been more than 18 months since the start of my symptoms).

    However, even if I don't meet the criteria for a trial, I find it encouraging to read about any ongoing or new medical research into MND - and people who are new to the this forum might be interested to know that the MNDA have a 'Take part in Research' webpage (which includes links to further information about this trial):-

    http://https://www.mndassociation.org/research/get-involved-in-research/take-part-in-research/

    Thank you again Ellie & love and best wishes to you and your family,

    Kayleigh x

    Leave a comment:

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