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Myelofibrosis--lowering platelets even more

  • karenr
  • Topic Author
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  • Diagnosed in 2000, at 59, after being on moderately high doses of NSAIDs for arthritis. Splenectomy and rituxan both failed (2004). Did well on prednisone till summer 2018--then terrible reactions. Promacta since 11-19.
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4 years 10 months ago #70279 by karenr
Myelofibrosis--lowering platelets even more was created by karenr
Does anyone have any experience with this bone marrow disease? If so, I'd appreciate any comments you have. I know the condition is rare, so I'm not expecting much feedback.
My myelofibrosis may or may not have been caused by the Promacta I've taken for a couple of years. If I'm lucky, it is the cause, and it will eventually reverse itself. It's possible, however, that the disease is primary.
Although I am now on 30 mg of pred/day plus Tavalisse, my platelets are very low (18K yesterday), apparently because the disease lowers platelets too. This is very discouraging.
  • 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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4 years 10 months ago #70281 by mrsb04
Replied by mrsb04 on topic Myelofibrosis--lowering platelets even more
Karen my heart goes out to you.
My understanding is that generally stopping Eltrombopag should reduce myelofibrosis.
Stopping Eltrombopag abruptly would cause a crash of counts. Hopefully they will rise on that much Pred. I tried Fostamatinib unfortunately it did not do a thing for me
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