← Return to Primary Myelofibrosis: so unsure of everything, need answers

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Hello lrkiesling@lrkiesling. I am so sorry for your feelings of uncertainty. I share your frustration. I am 74, and was diagnosed with ET in 2024 but refused the recommended medication. Then in 2025, following a bone marrow biopsy, my ET with CALR+, but JAK2- was confirmed. My husband was worried about my possibly getting blood clots and a stroke that I finally agreed to take the 500mg hydroxyurea 4X per week. Well, after 6 months, much of my hair fell out, 2 teeth cracked off, and my joints were constantly aching. The ONLY abnormal item in my blood draws were my high platelets (last count 448 on meds, 747 without). So I decided to go off of the medication and am being treated by my acupuncturist and functional medicine therapist. My last count was 700 after taking my prescribed supplements so I am hopeful it will continue to go down. I will meet with my hematologist again in May for further follow up. I eat an anti-inflammatory diet, work out at the gym 5-7 days/week, have low stress in my life (retired, twice!), my Christian faith keeps me grounded, and have 4 young grandchildren that I want to be healthy and active for. But everyone on this site has different reactions to the prescribed medications. Mine happened to be unacceptable for my quality of life. But keep reading what others post on this site to get a better idea of what will work best for you. We are all walking in your shoes! Love to you!

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Replies to "Hello lrkiesling@lrkiesling. I am so sorry for your feelings of uncertainty. I share your frustration. I..."

@lehall125
thank you. very encouraging and exactly what I need. you enjoy the grandbabies. life is so precious!