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    #46
    Hi Andy,

    Some basic forms of curcumin are better absorbed if taken with fat (meal)

    If you're talking specifically about Theracurmin by Integrative Therapeutics, there was no difference noted between taking it with food V on an empty stomach, according to Dr Bedlack.

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

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      #47
      Good morning Ellie and Barry

      Thank you for the information and the update.

      At the moment I take it in the morning, along with my riluzole which I also take with my early morning substantial slug of coffee.

      In the evening I take it along with my riluzole well after lunch and an hour before I my evening meal, whatever that is although it is not often substantial.

      So it sounds like you are both saying I do not need to change this habit in relation to the effectiveness of curcumin?
      Warmly


      Andy

      ​Diagnosed 03/2015. One sided limb onset (arm) sporadic ALS/MND. MND hitting - now 50% left arm and 90% right arm, plus other bits including left shoulder

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

      Comment


        #48
        Yes, from what I know about the Theracurmin trial at least, it doesn't matter if it's taken with or without food.

        On a side note Andy; you said you take riluzole with a "substantial glug of coffee" - caffeine is known to potentially decrease the elimination of riluzole from the body.

        Of course it's up to an individual as to what they do with this info - I enjoy my one cup of proper coffee daily and it helps my bowels so it's a case of eyes wide open in my case.

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

        Comment


          #49
          Good morning Ellie

          Thank you re theracumin - I have now heard from the supplier in the US uses exactly the same that it does not matter whether it is taken with food or without

          Originally posted by Ellie View Post
          On a side note Andy; you said you take riluzole with a "substantial glug of coffee" - caffeine is known to potentially decrease the elimination of riluzole from the body
          Yes indeed I had heard that caffeine might improve the effectiveness of riluzole - if indeed that what you are saying?

          For me the coffee is a simple addiction, I am pleased to say my digestive system works well at the moment.
          Warmly


          Andy

          ​Diagnosed 03/2015. One sided limb onset (arm) sporadic ALS/MND. MND hitting - now 50% left arm and 90% right arm, plus other bits including left shoulder

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

          Comment


            #50
            As always it's not so clear cut Andy Drugs are designed with elimination in mind.

            Decreased elimination of riluzole means it builds up in the body which could, in theory, result in increased toxicity.

            However, I can never find any data on how much caffeine, safe or unsafe, may interfere with riluzole's elimination.

            Personally, I continue to have my one daily coffee but keep an eye on my liver function with regular blood tests.

            It's not only caffeine which decreases riluzole's elimination, other culprits are: caffeine, diclofenac, diazepam, nicergoline, clomipramine, imipramine, fluvoxamine, phenacetin, theophylline, amitriptyline and quinolones

            If in any doubt, do ask your doctor.

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

            Comment


              #51
              Hi Ellie

              Thank you again – perceptive as ever

              Originally posted by Ellie View Post
              Decreased elimination of riluzole means it builds up in the body which could, in theory, result in increased toxicity
              Interesting you should mention toxicity - I wearing my rose tinted spectacles assumed that keeping the stuff in my body for longer would mean that it was more effective!
              Warmly


              Andy

              ​Diagnosed 03/2015. One sided limb onset (arm) sporadic ALS/MND. MND hitting - now 50% left arm and 90% right arm, plus other bits including left shoulder

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

              Comment


                #52
                Good morning

                It looks like I'm coming to the end of my six months of theracumin and of course being as I am in sample of one I have no idea if it is doing me any good at all but my thought is I'll buy myself another six months to keep up the pressure as it were.

                Any thoughts team?
                Warmly


                Andy

                ​Diagnosed 03/2015. One sided limb onset (arm) sporadic ALS/MND. MND hitting - now 50% left arm and 90% right arm, plus other bits including left shoulder

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

                Comment


                  #53
                  Andy, I found after about month 2-3, my pain reduced dramatically - I used to get neck, shoulder and T-spine pain.

                  My leg spasticity has reduced to a level where I've had to lower my dose of antispasmodic meds - I cannot say with 100% certainty that's it is due to taking Theracurmin but that is the only variable in my regimen of the past 10 years which has changed. And, in case you're wondering, the reduced muscle tone is very welcome indeed!! (I need to monitor my muscle tone as, if it goes too low, I may lose my functional spasticity which allows for standing transfers.)

                  Love Ellie.
                  Last edited by Ellie; 28 February 2020, 11:53.
                  ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                  Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                  Comment


                    #54
                    Good evening Ellie

                    Interesting that theracumin is possibly creating effect you mention.

                    As for me here I've noticed that the fasiculation in my legs seems to have stopped almost entirely and that I was able to move my fingers on my left hand a bit for for a certain amount of time although that seems to gone away again.

                    I know there is some suggestion that there are small reversals in MND contrary to the usual expectation that it is continually progressive so I would have no idea whether this was to do with theracumin or not.

                    But hey ho keep I will keep on taking it in case it does provide me with some longer life
                    Warmly


                    Andy

                    ​Diagnosed 03/2015. One sided limb onset (arm) sporadic ALS/MND. MND hitting - now 50% left arm and 90% right arm, plus other bits including left shoulder

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

                    Comment

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