Hi all,
Honestly, I have not taken any Hydrea although it was prescribed for me on 1-10-25 due to high platelets on routine blood lab. I too was concerned about the side effects of Hydrea, especially since I was prescribed 500 mg twice every day! I have no symptoms and feel just fine. Yes, I am 65 now but have always been very healthy and active and still am. Exercise helps me feel better when I start to stress so I make sure to get about one hour of cardio daily and stretching and yoga at least 20 minutes. I am 5 foot 2.5 inches and weigh no more than 108 pounds, have no other diagnoses although I do have white coat syndrome. I have checked my BP daily since my December 2024 doctor visit which showed elevated BP. If I sit for 5-10 minutes before taking my BP at home, it is normal. Today it was 110/68 pulse 73 even before going in for more lab work! My platelets are still high, 988, but still down from my first two labs with my taking nothing. My white cells remain elevated some too, but red cells and hemoglobin normal although hemoglobin was low on 2-2-25 lab when my O/H changed her 1-10-25 diagnosis for me of ET to “might be transitioning to PMF”. I do have CALR mutation so know that goes with myeloid proliferative neoplasm diagnosis but I am just not sure the docs really know what I have. I still have my long term almost five years now swollen non-painful right ring finger proximal phalangeal joint which I came in to doctor in the first place to check as my chief complain which still has not been addressed. I have read that chronic non-painful inflammation can also elevate platelet and white cells and just wish my swollen finger joint concern could be addressed before such rash diagnoses of ET and PMF and need for me taking Hydrea. Has anyone else encountered such issues and how do I approach my concerns? Thanks for listening.