Announcement

Collapse
No announcement yet.

Mirocals

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

    Mirocals

    Has anyone heard of this drug as I am being put forward for a clinical trial.
    Best wishes Jerry

    #2
    Hi Jerry,

    You will find information about this trial via this MNDA link.

    Regards
    Barry
    https://www.mndassociation.org/wp-co...A-MIROCALS.pdf
    I’m going to do this even if it kills me!

    Comment


      #3
      Hi Jerry,

      My husband has been on this trial since last year you will have to go to the hospital and do some breathing, blood test's etc. to have a base line then if you meet the criteria you will go on the trial 5 injections once a month, they are very good and have looked after my husband really well, good luck,

      regards Mandy

      Comment


        #4
        Thanks for that info Mandy. May I ask...

        How is your husband tolerating the drug?

        Does he think the trial is worthwhile for him personally?

        I wish him all the best.

        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


          #5
          Hi Ellie,

          The trial is randomised with a 50/50 chance of getting the medicine or the placebo, he gets reactions to each injection site and is ill with flu like symptoms right from the start so with the medical staff we know he is on the medicine, he has a slower type of early onset bulbar mnd but has not shown any major decline since starting apart from his voice which has nearly gone but was going before the start, for my husband he feels it is worthwhile and though he does not like feeling unwell for a few days each month he is hoping it helps them find some other medicine that might help others in the future.

          regards Mandy

          Comment


            #6
            Sounds positive Mandy.

            Good on him - and hope it benefits him in the long term x.
            ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
            Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

            Comment


              #7
              My husband is also on the trial. He gets a skin reaction and his arm is sore and aches after each injection, but he never feels unwell. He has only had 1 set of injections so far and I think he has declined since he started the trial, but we will keep going as long as he is able as there is not much else out there. He is on Riluzole as part of the trial and I definitely think that hasn't help. I am not sure how long it would take for the Mirocals drug to work - unfortunately that seems to a problem with drug trials, everything is a bit 'cloak and dagger' and no information is forthcoming. Also there is a 50% chance Tony is on the placebo.

              Comment


                #8
                Thanks Mandy

                Comment


                  #9
                  Thanks Barry

                  Comment


                    #10
                    One of my contacts is just back from a conference about this drug and she posted the following.

                    “Back from Milan. Excellent meeting for the Mirocals trial. Great team of researchers and IL2 looks promising. Hope it translates into a drug that really does make a difference. Still recruiting but have to be newly diagnosed and before starting to take Riluzole. As well as looking at IL-2 (interleukin 2) study also looking at how Riluzole works. Gilbert Bensimon ,who is leading study with Nigel Leigh, led the original Riluzole study which showed it improved survival.Strong team of neurologists, immunologists and neuroscientists taking part”.

                    Barry
                    I’m going to do this even if it kills me!

                    Comment


                      #11
                      My husband has just finished his 8th injection, just before he started this round he told me that his swallowing felt better and I had noticed he finished eating his food faster, once even before I had, though his voice has all but gone now the weakness in his face to the side of his mouth seems to be slightly improved in as much as I commented on what had he done differently to his lips, we are not getting too excited but if it can hold it steady we will both be more than happy for now, he has 11 months left of the trail so we will see how things go.

                      Mandy

                      Comment


                        #12
                        Holding steady is great, Nancy,

                        Noticing improvements is better and very positive. I think that feeling something is doing you good automatically improves things but this might be doing something.

                        Fingers crossed, Terry
                        TB once said that "The forum is still the best source for friendship and information."

                        It will only remain so if new people post and keep us updated on things that work or don't work and tips.

                        Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

                        Comment


                          #13
                          Very heartening to hear Mandy.

                          Wishing him all the best for the rest of the trial.

                          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


                            #14
                            I know there are Forum members on the MIROCALS trial, and maybe some considering taking part, so this Webinair may be of interest.

                            Wednesday 13th Feb @4pm. Register on https://xtalks.com/webinars/a-novel-...l-development/

                            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


                              #15
                              Thanks for the link Ellie, will tell him about it he may already know as he is always looking out for things about this and other trials he is looking to have his rig fitted at the end of the week and fingers crossed won't pick up any bugs before that, we both had one bug after another since 6th december so it's nice to feel more like normal for us lol.

                              His last trial injection is in April and he has been pretty stable all the way through with slightly more weakness in his lips than before he started, on the upside the muscules on the weak side of his face have started twitching and he does a brillant Elvis inpersonation at times now whether that is good or not who knows we just look on it as good for now.

                              Love Mandy

                              Comment

                              Working...
                              X