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Question regarding platelet count and Lemtrada (ITP)

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    Question regarding platelet count and Lemtrada (ITP)

    Hi everyone,
    I am still a bit indecisive about commencing Lemtrada.
    The more research I do- into studies/benefits as well as my own history etc the more I seem to have to weigh up.
    I have been following posts closely- thanks everyone

    My father passed away from ITP.
    This has been my primary concern with Lemtrada to date. I was told I would be admitted to hospital for the duration of treatment, watched closely and treated if necessary.

    I now know that the normal range for platelets (in AUS) is 150-450.
    I have had all the preliminary tests and am ok to start Lemtrada.
    So I am considered to be in the normal range platelet wise.
    My GP has printed the last 3 years blood test results.
    My highest count was 152 .
    My lowest was 114.

    These counts are mostly below the lowest end of the normal range. And that's before taking Lemtrada.
    We should have high end or above (like vit D)
    I am very concerned about the risk and have started supplements that may help with blood.
    Doc has said the most efficient way to lift platelets is transfusion and steroids.
    Very apprehensive of both!! Can't avoid steroids- part of regime anyway- but to pre-take both!?

    Would appreciate any feedback regarding Lemtrada users and blood platelet counts and treatments,tolerances, if counts dropped - time frame to elevation etc ?

    Thanks,
    n all the best.

    #2
    I don't know if this will be helpful or not.

    In November of last year, my wife got so dehydrated from Tecfidera that she was hospitalized with extensive DVT in one of her legs. She was put on Xarelto.

    I questioned everyone involved about the blood platelet issues in the Lemtrada safety information and the fact that she was on Xarelto. It did not set off any alarms with any of them, and she proceeded with her infusion while taking Xarelto and she is still on it. No problems.

    It is my understanding that Xarelto doesn't affect platelet count, it just reduces the ability of the platelets to bond, so this may not be relevant to your decision, but I thought I'd throw it out there. That safety information is scary reading, so I can certainly understand you concern. Best of luck with your decision.

    Comment


      #3
      Hi Caroline are you being admitted into hospital for the treatment?, the Dr is treating me as an outpatient so I will stay in a motel for the period of treatment not happy about that Craig

      Comment


        #4
        Platelet count

        Originally posted by Carolinemf View Post
        Hi everyone,
        I am still a bit indecisive about commencing Lemtrada.
        The more research I do- into studies/benefits as well as my own history etc the more I seem to have to weigh up.
        I have been following posts closely- thanks everyone

        My father passed away from ITP.
        This has been my primary concern with Lemtrada to date. I was told I would be admitted to hospital for the duration of treatment, watched closely and treated if necessary.

        I now know that the normal range for platelets (in AUS) is 150-450.
        I have had all the preliminary tests and am ok to start Lemtrada.
        So I am considered to be in the normal range platelet wise.
        My GP has printed the last 3 years blood test results.
        My highest count was 152 .
        My lowest was 114.

        These counts are mostly below the lowest end of the normal range. And that's before taking Lemtrada.
        We should have high end or above (like vit D)
        I am very concerned about the risk and have started supplements that may help with blood.
        Doc has said the most efficient way to lift platelets is transfusion and steroids.
        Very apprehensive of both!! Can't avoid steroids- part of regime anyway- but to pre-take both!?

        Would appreciate any feedback regarding Lemtrada users and blood platelet counts and treatments,tolerances, if counts dropped - time frame to elevation etc ?

        Thanks,
        n all the best.
        At my 3rd monthly blood draw, my neuro called me and said my platelet levels showed "outside of range" (whatever that meant, he didn't say and I didn't research). I didn't feel bad, and he only wanted me to go get it re-tested. The re-test showed it in normal range, so nothing else was done. I had asked the nurse what would happen should it still show out of range, but she wouldn't tell me, so I suspect it would have been a transfusion. This is my second year with Lemtrada and the first time the platelet level has shown low. My leukocyte level at month 3 post infusion is very low (exactly what my neuro was looking for) and that repopulation is expected to be back up to normal levels by Christmastime.

        Hope this helps!

        Comment


          #5
          Hi Guys just had my first blood test after starting lemtrada 01/12 and last night 02/12 I received a phone message from blood watch at 10.30pm saying my platelet count was down to 122 and to seek medical attention immediately, and to contact my neurologist and Dr well at 10:30pm I couldn't contact either my neurologist or Dr so I went to the hospital emergency more or less for reassurance, after 3 hours and more blood tests my results were that my platelet count had risen to 160 and to go home and contact my neurologist next week, so all that panic for nothing but all good in the end Craig

          Comment


            #6
            Hi Guys,
            I'm leaving Lemtrada on the shelf for a bit longer. Had Neuro apt Dec 13. Already have average platelet count of about 120 (150-400ish considered normal range) so it has been recommended i see a haematologist. It's likely I would need a transfusion prior to starting Lemtrada.

            Dr was going to admit me to hospital for treatment due to risks. I also live 4 hrs away and would have had to stay in a motel too. Hope this finds you well Craig.

            All the best.

            Comment

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