Announcement

Collapse
No announcement yet.

Blood Test Rilozole

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

    Blood Test Rilozole

    The issues with my GP continue.

    I make my own appointments for blood tests due to taking Rilozole, as GP is still refusing a Shared Care Protocol.

    My friend is nominated to speak on my behalf. She rung up for the results and was told my serum protein levels were abnormal. They made an appointment for another test in two months.

    I told my friend I needed another monthly test in March and they asked what it was for. 😡

    The nurse asks me every time what bloods we are doing.

    My consultant has written to them detailing what tests are required and citing all the reasons Rilozole is safe to prescribe. He has also asked them to prescribe Glycopyrronium Bromide. All is being refused.

    Any idea what abnormal serum protein means?

    I think it is transaminases and his letter states that is clinically insignificant unless they rise to three times the upper limit of normal. The GP has all the letters.

    I have asked the MND Nurse to ring them up.

    So frustrated.
    Diagnosed 3rd November 2021 Bulbar Onset

    #2
    When did you start taking Riluzole? xx
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
    Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

    Comment


      #3
      GillB - yes, the blood test measures alanine transaminase ALT.

      Your consultant is right about x3

      Doug
      Diagnosed April 2017

      Comment


        #4
        Ellie

        3rd November 2021 but only had the first blood test and December.
        Diagnosed 3rd November 2021 Bulbar Onset

        Comment


          #5
          Originally posted by Doug Carpenter View Post
          GillB - yes, the blood test measures alanine transaminase ALT.

          Your consultant is right about x3

          Doug
          Thanks for clarifying Doug Carpenter
          Diagnosed 3rd November 2021 Bulbar Onset

          Comment


            #6
            ALT levels tend to subside over the first few months

            Doug
            Diagnosed April 2017

            Comment


              #7
              Originally posted by GillB View Post
              3rd November 2021 but only had the first blood test and December.
              The stated blood testing regimen for Riluzole is:
              "Because of the risk of hepatitis, serum transaminases, including ALT, should be measured before and during therapy with riluzole. ALT should be measured every month during the first 3 months of treatment, every 3 months during the remainder of the first year, and periodically thereafter. ALT levels should be measured more frequently in patients who develop elevated ALT levels."

              So, you should have had blood tests in December, January and February, however, as your ALT (or perhaps AST) was raised, in theory that sounds reason to have a blood test before May.

              As for the ALT tolerance: whilst flags are raised at 3x ULN levels, the stated protocol is: "Riluzole should be discontinued if the ALT levels increase to 5 times the ULN."

              None of this lessens the fact that you're dealing with a right jobsworth... 😟😘
              ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
              Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

              Comment


                #8
                Originally posted by Ellie View Post
                None of this lessens the fact that you're dealing with a right jobsworth... 😟😘
                Ellie thanks

                You are not wrong there. I'm seeing the consultant soon so will see what he can do. He has already written them a few shirty letters.

                Guess what that tried to auto correct to 🤣
                Diagnosed 3rd November 2021 Bulbar Onset

                Comment


                  #9
                  GillB my 2nd blood test showed abnormal ALT but last one it went down to well within normal. So like the others stated it can do this and stabilises.

                  Ellie put my mind at rest when I became worried.

                  I also sort my own blood test but the g.p was helpful in printing me about 8 blood forms. Maybe you could ask for several blood forms.

                  Its awful when g.p don't assist. Its all about money sadly.
                  Diagnosed May 2021 bulbar onset als.

                  Comment


                    #10
                    shelly21

                    Thanks for the advice. Reading your posts though I think you have had it particularly hard with joined up care. I can't fault anyone else. They have all been brilliant. x
                    Diagnosed 3rd November 2021 Bulbar Onset

                    Comment


                      #11
                      GillB yes I've not had a smooth journey but my g.p is at least keeping up his end of the bargain.

                      Ix
                      Diagnosed May 2021 bulbar onset als.

                      Comment

                      Working...
                      X