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Scottish MND drug trial

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    #31
    Good morning Lee and Ellie

    Thank you both for that information - I'm with you Lee and will wait to see where this goes before jumping in.

    As you say I guess some people will try and get this stuff outside the trial but I'm loathe to do anything of that sort until we have some evidence
    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"

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      #32
      Originally posted by nunhead_man View Post
      Good morning Lee and Ellie

      Thank you both for that information - I'm with you Lee and will wait to see where this goes before jumping in.

      As you say I guess some people will try and get this stuff outside the trial but I'm loathe to do anything of that sort until we have some evidence
      I don’t suggest in anyway getting drugs outside of the trial guys. Sorry shouldn’t have mentioned that.

      I am waiting to see what pre-clinical has lead to these trials. This might be a great trial, but it might just fall flat on its face.

      The alzheimers drug is interesting, but the the anti anxiety drug comes with a shed load of side effects. Yes both drugs are trying a small dose, but I need to see the pre-clinical before I get excited.

      Lee

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        #33
        Originally posted by Onein300 View Post
        Loads of other glutamate reduction drugs were tested, including memantine (over 10 years ago) - with no success.

        Bringing the two together might help, but it might do the opposite! Unless of course there is new pre-clinical evidence to say otherwise?
        Notwithstanding any newly found preclinical evidence regarding Memantine, its previous clinical trial, for which results were published, consisted of one cohort of patients taking Memantine plus Riluzole and the other cohort taking the placebo plus Riluzole.

        This MND-SMART trial has no mention of Riluzole as either an exclusion or inclusion criterium. As this is a randomised, double blind trial, I am somewhat confused as to the (unknown) concomitant use of Riluzole in the Memantine cohort and how any effects could thus be solely attributed to Memantine?

        I guess it’s wait and see.
        ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
        Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

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          #34
          That was probably me confusing the situation by getting side-tracked by the issue of glutamate and mentioning Riluzole in my post - sorry!

          Kayleigh x

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            #35
            No Kayleigh, your post didn't confuse anything, don't worry - I was aware Memantine mops up glutamate.

            My 'confusion' stems from fact that, in a randomised, double blind trial, there seems to be no way to distinguish between those who are Riluzole naïve or established on Riluzole, but this needs to be verified.

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

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              #36
              Originally posted by Ellie View Post
              No Kayleigh, your post didn't confuse anything, don't worry - I was aware Memantine mops up glutamate.

              My 'confusion' stems from fact that, in a randomised, double blind trial, there seems to be no way to distinguish between those who are Riluzole naïve or established on Riluzole, but this needs to be verified.

              Love Ellie.
              No confusion at all guys. This is all excellent discussion.

              Yes the earlier trial did have Riluzole in you are correct.

              Platform trials are very very interesting. However, we must not get lured into they are panacea. For example you have to increase the number of cases to be able to do everything mathematically needed.

              750 patients is huge, but needed.

              With such numbers, the effect of riluzole/memantine Or just memantine might be possible to sift out if there are good number not on Riluzole. The unblinded data will have all the detail in.

              At first sight, the protocol does concern me though. And yes, unless there is some new pre-clinical evidence we are not aware of I am not seeing how it is going to reveal anything major.

              Comment


                #37
                Ellie, Riluzone is continued while everone is on this trial. It's on the trial plan. Lynne 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.

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                  #38
                  Yes people can continue taking Riluzole if also taking Memantine, but not everyone takes Riluzole.

                  So, if some in the Memantine trial cohort take it, andothers don't, given its similar pharmacodynamic properties to Riluzole, extrapolating effects attributable to Memantine alone won't be easy?
                  ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                  Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

                  Comment


                    #39
                    Originally posted by Ellie View Post
                    Yes people can continue taking Riluzole if also taking Memantine, but not everyone takes Riluzole.

                    So, if some in the Memantine trial cohort take it, andothers don't, given its similar pharmacodynamic properties to Riluzole, extrapolating effects attributable to Memantine alone won't be easy?
                    It all depends on the numbers of each combination. Most will be taking Riluzole I expect. So yes, they will most certainly only be able to be sure of the combination!

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                      #40
                      It is a randomised, double blind trial, so the fact that some people will be or won't be or maybe will stop or start taking another glutamatergic drug (riluzole) during the memantine trial, seems odd BUT I am quite sure the boffins at the MND SMART trial know heaps more than I do.
                      ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                      Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

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                        #41
                        last year i did self trial with trazodone. it is very strong . hard to tolerate side effects . i continued for several months but i didn't see any benefit .

                        do you know the most probably side effects of memantine ?

                        Comment


                          #42
                          Hello Timm,

                          Concerning your question about Memantine, I have provided a link below to a patient information leaflet about the drug (I understand that in the trial it will be provided as a solution rather than a tablet) which includes a list of possible side effects:-

                          http://https://www.medicines.org.uk/emc/product/3312/pil

                          Best wishes,
                          Kayleigh

                          Comment


                            #43
                            does anyone think a self trial with memantine?

                            Comment


                              #44
                              whilst a fantastic gesture £1 .5 million needs topping up, our government should be all over this. MND is shamefully ignored.

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