Announcement

Collapse
No announcement yet.

Potential Trials and Medication

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

    Potential Trials and Medication


    Hello everyone

    We have been offered tudca as part of Tricals.

    However with placebo, we are considering purchasing:

    1. Tudca
    2. Sodium phenylbutryrate (to form amx0035)
    3. Possibly L-Serine

    Has anyone tried these treatments.
    Many thanks for your advice

    #2
    gpduffy Welcome to the forum.

    Just to clarify: are you participating in the Tudca trial or shunning it because of the risk of getting the placebo, so will do your own DIY Tudca trial?
    Last edited by Ellie; 6 May 2021, 13:43.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
    Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

    Comment


      #3
      Hello I've taken Tudca but not Sodium phenylbutryrate. Not tried to measure any possible slowing of symptoms - just helps me feel at least doing something!

      Comment


        #4
        Hello, I've requested that I be put forward for a place in the Stoke cohort, but I live near Leicester, which may be considered remote. In the meantime, I've bought some capsules; I take one in the morning and evening together with my Riluzole tablets. The TUDCA capsules are 500mg strength, but the study states that 4 x 250mg will be issued twice a day. To match that, I would have to take two capsules twice a day, but they measure 20mm by 7mm diameter, which is a bit on the big size.

        Comment


          #5
          Get a PEG makes meds alot easier 😀x
          Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

          Comment


            #6
            Thank you - debating whether or not to take part in a Tulca trial when the medication is readily available.

            Is anyone taking sodium phenylbutryrate?

            Comment


              #7
              Interesting, have not even heard of this trial. I was considered for a gene directed trial but cannot remember the name! Got rejected anyway - for a good reason, my diseas is progressing too slowly! Not at all like me mum, who had rapid progression.
              Mum died with MND in 1979 – I have a wonky gene, probably inherited from her. Reckon mine started sometime in 2018

              Comment


                #8
                Hi Evelyn - Google ​amx0035 - can buy Tudca but ​sodium phenylbutryrate more costly and difficult - and only possibly slows progression a bit - I think​​​​​

                Comment


                  #9
                  Sodium phenylbutyrate is available from this reputable supplier at an eye watering price: https://thesocialmedwork.com/ammonap...phenylbutyrate

                  Google it and you can undoubtedly find it cheaper but do your homework on suppliers. x
                  ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                  Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                  Comment


                    #10
                    It may not be a cure, but Guanabenz (Wytensin) combined with riluzole is said to slow down the progress of the decease. Wytensin tablets are available, but I don't know where you could buy them; probably just in the US for a high price.

                    Comment


                      #11
                      Where can you buy Guanabenz (Wytensin) in the UK please?

                      Comment


                        #12
                        gpduffy Good luck in finding a pharma company in the UK who will sell direct...

                        Don't suppose you own horses 😏
                        ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                        Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                        Comment

                        Working...
                        X