derikburger @derikburg My PV caused Myelofibrosis, I was diagnosed Dec. 30, 2022 . Jakafi, Hydroxyurea , INREBIC (fedratinib) and phlebotomies - All these meds lower numbers but your with your low numbers, the disease is progressing. That's really hard because less options. How are your pain and fatigue? (I've had bone pain for few years and getting worse) Just got handicap sticker and walker/ "Don't want use them and try NOT too but my legs stop working and I get stuck" I miss having normal functioning legs" I can walk, but it's when I over do it and my body stops working and I shuts down! Pain and fatigue sometimes level 10. I'm so sorry (my liver and spleen are double the size) I can't be in control something I have no control over, but learning, education, researching and asking questions, talking to those that had it helps. Prayers, my friend
Did you have PV or is it Primary Myelofibrosis?