Hi, Im 65 with ET, JAK2 since 2013. Its been 8 years that Im taking Hydrea medication and my daily dose today is 1000/1500mg. My platelet counts currently are 766, but RBC is gradually decreasing (3,2).
Please do share your opinions or if you have similar experience. Thank you very much in advance!
Marina
I am 76 and had ET, JAK2 for about 24 years. The goal was to keep the platelets below 650. They were typically in the 400s and 500s on Hydrea. I was up to between 1500 mg and 2000 mg of Hydrea. My RBC was in the 2.7 to 3.3 range during that time. My ET progressed to myelofibrosis and I switched to Jakafi which suppresses the red cells even more. I have been on Jakafi now for 5 years. I take monthly aranesp shots which increases my hemoglobin about 1 point, but am still anemic and get a lot of fatigue. My latest RBC count was 2.9.
It is to be expected that your RBCs would decline with the course of using HU. HU inhibits all hematopoiesis, not just thrombopoiesis. Myelosuppression and anemia are well known side effects. You are already on a fairly high dose of HU per the prescribing guidelines noted in ePocrates.
*polycythemia vera
[500-1500 mg PO qd]
Info: titrate to control Hct and platelet count
*thrombocythemia, essential
[15 mg/kg/dose PO qd]
Info: titrate to control platelets and maintain WBC count
The fatigue could most certainly be related to the anemia or to the ET directly; however, asthenia and dyspnea are common side effects from the HU as well. Side effects are dose-related so if you were to increase your HU dose, increased side effects would be expected.
I experienced HU-intolerance and simply cannot take it due to the toxicity I experienced even at very low doses. The good news is that there are other options. I cannot speak to whether it is time to consider other options for your MPN treatment. That is something you would have to review with your care team. It may be that there would be more viable options for you.
Hope that helps. All the best to you.
Thank you hunter5582 for your reply. It was very helpful to read. Take care and best of luck
The doctors have been pushing me to take hydroxyurea but so far I have refused. Chemo drug which causes progression to other drugs and even possibly to leukemia. Diagnosed in 1994 with a blood disorder and tested positive for the JAK2 mutation in 2015 and they claim it is PV. Also turned down a bone marrow biopsy which I hear is very painful. Best to you, Henry
Overheating at night 
vegetarian with pv 