Polycythemia Vera and low iron
I was diagnosed with POLYCYTHEMIA VERA in 2017 at age 57 and shortly thereafter with RA (I am on Rinvoq for RA). I was and still am asymptomatic, just had high hemoglobin and hematocrit. I am JAK2 positive. Currently I am on 200 mg of Hydroxyurea daily (I did not tolerate 500mg) and 81mg aspirin. Having phlebotomies about every 12 weeks (sometimes sooner) which has caused me to have low iron. I tolerate phlebotomies well. According to hematologist my goal Ferritin is under 5 which it has been for quite a while. Also my instructions are to eat less than 50% daily recommended iron. Anybody else dealing with low iron with PV? Feel like my options are limited. Currently feeling some muscle weakness during my runs (I love running!) Would love to hear from other PV patients.
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The low iron level is a sore point with all of us PVers. At 75 yrs old, I find that an afternoon nap (about 45 mins) is a must for me to get through a 15 hr day. I wish I could tell you there is a distinct pattern to this disease but I can't find one. My WBCs go down. My WBCs go up. My platelets go up. My platelets remain the same.
I wish there was a magic bullet for this thing, but I have not found it yet.
The skin cancer complications with the drugs is annoying. I have had a total of 10 MOHS procedures now.
Hang in there. Its a "marathon not a sprint".
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