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polycythemia vera

Hi, I'm Charlotte C.

diagnosed with polycemia vera .Have been taking hydroxyurea 2xday or 9 months, bone pain is becoming very servere. has any one one else taking it having the same problem?

  • Post #1
  • Sun Feb 3, 2019
Hi, I'm Jill F L.

My mother had pv for a couple years. She couldnot tolerate the hydroxyurea. It made her feel so sick. She would sit wrapped in a blanket and shake all day. She only had one phlebotomy. Her main problem was high platelets. She had 2 strokes at the start, which lead to the PV diadiagnosis. Prior to PV, mom had a pacemaker for Afib. She was on Warfarin and asprin. I was diagnosed with Essential Thrombocythemia about 5 years ago. Hemo Dr said it is not hereditary but, what a coincidence. I thankfully can tolerate the hydroxyurea and have been on 1,000 × 4 and 1,500mg x 3 per week. I feel bone and muscle pain and weakness. I take an ADHD pill daily which helps a bunch with my energy level. I hope that helps. I am sorry for a late response. I don’t get on the web often.

  • Post #2
  • Mon May 27, 2019

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