Hello, friends! I am newly diagnosed with PV. Have been trying to keep my blood counts down with aspirin and monthly phlebotomies. My doctor has been talking to me about starting medication. My question for y'all is this - have any of you taken hydroxyurea and then Jakafi? If so, which one did you feel better on? Also, did you feel the medicine was worth the risk and side effects of the medication?
Thanks!
Kelly
I started on 500 mg/day HU in 2022, but dropped my counts too low so stopped. Ii restarted in March with every other day. It seems to have brought my numbers down gradually. I was having phlebotomy every month, but did not need it the last two months. I do have moderate fatigue with SOB, but I am iron deficient. I’m not sure how long it might take to bring up my iron level. I am being considered for the Rusfertide clinical trial which is supposed to regulate your iron and Hct levels.
I highly recommend asking about besremi- it's newer and doctors are less familiar with it. It's the only drug that has shown possibility of remission for PV. I've been on it for almost a year with no side effects and I'm now up to 4 months without phlebotomy.
I started with 500 hydroxy daily , took for 3 weeks then became ill with fevers , weakness , fatigue was hospitalized , all my blood counts dropped meds were stopped , had bone marrow biopsy confirmed PV No leukemia, still very fatigued and short of breath doctors doesnot believe related to PV I am shocked told me to see my family🤪🤪doctor nothing more he can do , also maybe see pulmonologist, I had to restart the hydroxy on a every other day basis just started yesterday, I’m wondering has anyone else had to do this, Best to you with your next step !