Hi @papa6275 - my diagnosis was JAK2 PV in May ‘22. Like you I did not tolerate Hyderabad and it didn’t do me any good, despite 3 phlebotomies. Switched to Jakafi 10 mg and blood count and platelets came down very slowly but not enough or stabilizing my so… changed by haematologist to 20mg since Dec and results much better and platelets still going down slowly. The only side effects I’ve had is sensation of heavy legs (of and on), tingling in toes and feet (have been told « scrungy » toes is side effect) and very irritating sensation of oncoming UTI with pressure to urinate, but it is never a UTI. (Phew!) I also réalise I’m tired more quickly and can at times be very irritable. 😊😊
Female, 75 yrs of age. My check-ups have gone from monthly to 3m and next one is with 6m gap.
Living life as best I can and just getting on with it.
Hope some of this help you going forward. All the very best.