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I've given up on Romiplostim/NPlate AGAIN 8 months 1 week ago #71925

  • mrsb04
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  • ITP since 2014. Retired nurse. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use.
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So  in June after reluctantly  going  back on Romiplostim  following my loss of response to Eltrombopag (Promacta/Revolade) I have given it up as a bad job.
Experiencing increasing bone, joints and muscle pain  over the last 6 weeks and multiple bruises. 5 weeks  ago I had the most horrendous posterior nosebleed ever.... 35 minutes to stop the bleeding. My count the previous week was 111. 
I took a  4 day Pred  bolus of 25mg/15mg/10mg/5mg on top of regular 2mg/day that brought my count to 68. A week later it was 22, and the following week it was 37. Now it is 15. 
I am not prepared to suffer side effects of a medication that is not doing its job properly so that is the end of TPORAs for me. 6  years pushing my bone marrow is enough for me. 
I have opted to go for 5mg Pred a day for a month to see what that does. It shouldn't reduce my immune system too much at that dose but might just keep my count above 30, where upon I will be asymptomatic. 
I am being worked up for the PRN1008 trail with the aim of starting it early on next year. That is assuming I pass all the work up tests. 

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I've given up on Romiplostim/NPlate AGAIN 8 months 1 week ago #71926

  • CindyL
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Aw, sorry to hear of your troubles, mrsb! Hopefully the Pred won't cause you any or many issues.
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I've given up on Romiplostim/NPlate AGAIN 8 months 5 days ago #71933

  • MelA
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Oh mrsb I'm sorry your I'm sorry - you sure are having a time of it!  I'm with  you - if a medication isn't working why stick with it and suffer the side effects.  I sure hope the 5mg of pred daily will do the trick and bring your count back up to a good count!  Fingers are crossed the trial comes through for you!
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD
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I've given up on Romiplostim/NPlate AGAIN 1 month 3 weeks ago #72415

  • Suzana1995
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      I started with Romiplostim in Decembar 2021. I dont' have reaction  to intravenous immunoglobulin, dexamethasone, methylprednisolone. Since 31May I don't recive Nplate because platelets are 342 000. 

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