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SLS-005 or trehalose

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    #1

    SLS-005 or trehalose

    Hello,

    Me again!

    Again have warriors here seen anything about SLS-005 or trehalose?

    https://alscrowd.org/fda-grants-orph...N-OrDmcSpWZVZU
    Warmly


    Andy

    ​Diagnosed 03/2015. One sided limb onset (arm) sporadic PMA/MND - now 50% left arm and 90% right arm, plus other bits including left shoulder– Campaign contact Winchester and Southampton branch, and trustee of the Association

    "Things turn out the best for people who make the best of the way things turn out"
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    #2
    Great drug hope the trials work out well

    Comment

      #3
      Originally posted by nunhead_man View Post
      Hello,

      Me again!

      Again have warriors here seen anything about SLS-005 or trehalose?

      https://alscrowd.org/fda-grants-orph...N-OrDmcSpWZVZU
      How strange Andy,

      I became aware of trehalose in my career within the sugar industry as it is used as an artificial sweetener in the food and beverage industry. I am amazed that it may have benefits in the medical care system.

      Thanks for posting the link.
      I’m going to do this even if it kills me!
      • 1 like

      Comment

        #4
        Originally posted by nunhead_man View Post
        Again have warriors here seen anything about trehalose?
        Andy, just from a DIY point of view:

        You would need to do research on the dose of trehalose - how the body metabolises trehalose is very complicated and the method of its administration in clinical trials is IV. Titrating an IV dose of 30g to an equivalent oral administration is very difficult.

        Plenty of work to keep you going over the holiday period!
        ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
        Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.
        ​

        Comment

          #5
          Good afternoon Ellie

          Thank you for your DIY point of view!

          New information that the test testing is being done by IV.

          No idea how much that would turn into as an oral dose of the sugar but I guess it is several spoonfuls!
          Warmly


          Andy

          ​Diagnosed 03/2015. One sided limb onset (arm) sporadic PMA/MND - now 50% left arm and 90% right arm, plus other bits including left shoulder– Campaign contact Winchester and Southampton branch, and trustee of the Association

          "Things turn out the best for people who make the best of the way things turn out"

          Comment

            #6
            Originally posted by nunhead_man View Post
            New information that the test testing is being done by IV.
            What is "test testing"?

            ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
            Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.
            ​

            Comment

              #7
              Originally posted by nunhead_man View Post
              No idea how much that [30g of IV trehalose] would turn into as an oral dose of the sugar but I guess it is several spoonfuls!
              I suspect it's a lot more than "several spoonfuls" and even if an oral dose of significant quantity could ever replicate the IV 30g...
              ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
              Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.
              ​

              Comment

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