Diagnosis of ITP in 2014. Retired (Nov 2019) renal specialist nurse, 46 years on the NHS front line. 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.
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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