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Thread: REFALS - Effects of oral levosimendan (ODM-109) on respiratory function etc

  1. #1
    Forum Member nunhead_man's Avatar
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    REFALS - Effects of oral levosimendan (ODM-109) on respiratory function etc

    Good morning,

    I was kind of leapt on when I went into Kings yesterday for my 6 monthly check yesterday.

    Apart from REFALS, there also seems to be a study going on about the best way to control saliva ( Sheffield - 18/SC/0031) and a study going on to look at the mental effects of MND on cognitive function (MNDA funded - measuring cognitive and behavioural change in ALS - LREC 18/LO/1257).

    And there is also ALSFRS-R Online validation (17/NE/0518) - this is a study to test a new online version of the questionnaire commonly used in research and routine clinical care on motor neurone disease

    They are recruiting for REFALS which looks at the effects of oral levosimendan (ODM-109) on respiratory function in patients.

    "Studies have shown that levosimendan (ODM-109) might be useful for improving the muscle strength of the diaphragm and might therefore improve breathing ability for patients with ALS overall increasing well-being and function"

    This is one of the crossover things as this drug is presently approved in many countries but not in the UK for use in heart failure

    I suspect I am marginal because they want people who started having effects less than 48 months ago and I am on the cusp of that plus I might not have enough damage to my breathing function yet - a apparently there is a range they want.

    So we will see

    Best to all

    Andy
    Last edited by nunhead_man; 10th May 2019 at 11:23.
    Andy

    ​Diagnosed 03/2015. Limb onset (arm) sporadic ALS/MND.

  2. #2
    Thanks for the update Andy. There is clearly a lot going on.

    I was roped in the ALSFRS-R online validation study a couple of weeks ago at the MND clinic at the John Radcliffe in Oxford, where Prof Talbot is leading the study in conjunction with Kings.

    Here is the link:

    http://www.mndcsg.org.uk/mnd-clinica...idation-study/

    It is very quick and simple to participate. People willing to help should perhaps contact Lynn Ossher.

    Doug

  3. #3
    Forum Member Ellie's Avatar
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    Thanks Andy.

    The SVC range for the levosimendan trial is 60-90%, so if your SVC is too high, it's no bad thing!

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  4. #4
    Forum Member Ellie's Avatar
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    I'm too decrepit to even qualify for the ALSFRS-R trial
    Last edited by Ellie; 10th May 2019 at 14:36.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  5. #5
    Forum Member nunhead_man's Avatar
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    Good afternoon Ellie,

    Quote Originally Posted by Ellie View Post
    The SVC range for the levosimendan trial is 60-90%, so if your SVC is too high, it's no bad thing
    Indeed - I did not mention "SVC range" in case it was too complicated :-)

    I appear to be on the edge of the range in both cases in that I am just inside 48 months in terms of the "when stuff 1st started to happen" box and my SVC is apparently 90 - so my breathing is beginning to start to show some stress but I am not showing any difficulty in my day-to-day.

    And I am not sure I would ever want to describe anybody with motor neurone disease as "decrepit" - I think there is enough nasty naming going on with the description of "man in a barrel" syndrome (MND person with loss of use of both arms) which my own neurologist calls "flail arm"

    Warmly

    Andy
    Last edited by nunhead_man; 10th May 2019 at 15:13.
    Andy

    ​Diagnosed 03/2015. Limb onset (arm) sporadic ALS/MND.

  6. #6
    Forum Member nunhead_man's Avatar
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    Good afternoon Doug

    Thank you for your thanks!

    Quote Originally Posted by Doug Carpenter View Post
    I was roped in the ALSFRS-R online validation study a couple of weeks ago at the MND clinic at the John Radcliffe in Oxford, where Prof Talbot is leading the study in conjunction with Kings.
    Indeed - I am just waiting for the nurse specialist I was talking to about it to send me the link.

    Can you check your other thread for the information I asked you for about the other trial you are involved with at Oxford?

    Warmly

    Andy
    Andy

    ​Diagnosed 03/2015. Limb onset (arm) sporadic ALS/MND.

  7. #7
    Forum Member Ellie's Avatar
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    Andy, I call myself decrepit - nothing like a bit of self-deprecation
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  8. #8
    Andy

    If that was about the C9orf72 Cohort Study, the link is:

    https://www.hra.nhs.uk/planning-and-...-cohort-study/

    - and you could contact either Prof Talbot or probably better Lynn Ossher, the research coordinator for all the studies at the JR.

    Doug

  9. #9
    Forum Member nunhead_man's Avatar
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    Good afternoon Doug

    Quote Originally Posted by Doug Carpenter View Post
    If that was about the C9orf72 Cohort Study
    Thank you it was

    I have sent an email to the Prof but if you say someone else might be better perhaps you could let me have her contact details?

    Warmly

    Andy
    Andy

    ​Diagnosed 03/2015. Limb onset (arm) sporadic ALS/MND.

  10. #10
    Andy

    They were in the post about the ALSFRS-R study a few messages earlier.

    Doug

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