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Promacta problems

  • karenr
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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 11 months ago #70160 by karenr
Promacta problems was created by karenr
I started Promacta almost 2 years ago and used it without incident--with the tapering prednisone--until this spring. Abscesses in my back necessitated 4 months of powerful antibiotics, one, for 2 months, self-administered through a port in my arm. I have been off antibiotics for a few weeks now and am on probiotics to help my gut recover. My platelets have ranged from 9 to 52K during the past months though my Promacta has increased to 75/day and my prednisone to 9-10/day. Most of my counts have been low--yesterday 13K. I had hoped the antibiotics were decreasing platelet production.

Meanwhile my WBC has been getting higher--30 the last 2 CBCs, and I have developed myelocytes and metamylocytes. Hema ran a test which ruled out CML, and now has ordered more tests (JAK2 V617F) and a bone marrow biopsy to check on even scarier things.

I know Promacta can cause myelofibrosis. Is this reversible once one stops the Promacta?

Has anyone else had scary blood results like these while on Promacta? Increased WBC?

My anxiety level is really high right now--the U.S. election and my blood are really increasing my agitation!