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Promacta caused myelofibrosis

  • 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 #70221 by karenr
Promacta caused myelofibrosis was created by karenr
A bone marrow biopsy has revealed that I have myelofibrosis in my bone marrow, probably caused by Promacta. My abnormally high WBC is now explained. I am ceasing Promacta immediately, and my hema warns me that I will probably be on high doses of pred until Tavalisse, which he has ordered for me, arrives. I'm nervous about this drug too, esp. since I'm prone to nausea and diarrhea, and I've read of the common side effects.

Wow, does this ever increase my anxiety, and the pred is likely to exacerbate it further.

The Promacta (75 mg/day) plus 9 mg of pred were keeping my platelets at rather minimal levels--since Oct 1, from 13K to 36K.

Any input appreciated!
  • mrsb04
  • Offline
  • 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 #70225 by mrsb04
Replied by mrsb04 on topic Promacta caused myelofibrosis
Sorry to hear that Karen.
How high is your WBC? Taking Pred is a known cause of elevating it.
I hope Tavalisse works for you. I was part of the UK branch of the clinical trial 5 years ago. It did not work for me but I had no gastro intestinal effects from it , even at the highest dose.
After a year of Nplate I have been on Promacta since early 2017 taking 75mg for the last 10 months. My last blood results noted teardrop shaped red cells which can indicate the start of myelofibrosis. I had perfectly normal bone marrow 6 years ago when I was diagnosed. My next consult with my haemo is in a couple of weeks so I'll be raising this with her.
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