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Polycythemia Vera and low iron

Posted by finntastic @finntastic4, Jan 26, 2025

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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finntastic | @finntastic4 | Jun 3 7:04am
In reply to @jonnypouchw "Do you have any abdominal bloating and pain associated with this condition I've been tested for..." + (show)
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Do you have any abdominal bloating and pain associated with this condition I've been tested for everything but pv I have a epo of 4.2 and high hemoglobin and high hemocrit for over a year just curious what if any symptoms you got later as you were asymptomatic before diagnosed

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@jonnypouchw hi! It has been nine years since my PV diagnosis and (lucky me) I am still asymptomatic. Just have the low iron now, phlebotomies continue every 6-12 weeks. I did look at my medical records and noticed I had high hemoglobin/high hematocrit for over 10 years before diagnosis.

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louiseturgeon | @louiseturgeon | Jun 3 7:14pm
In reply to @nypara66 "@1hostahoney I have PV JAK2 positive and take Hydroxyurea also. My doctor wants to increase to..." + (show)
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@1hostahoney I have PV JAK2 positive and take Hydroxyurea also. My doctor wants to increase to lessen phlebotomies. Currently every 8-10 weeks to keep numbers in check but it gives me too much tooth nerve pain and extreme sun sensitivity if I take too much. So she wants to switch me to Jakafi to lessen phlebotomies also. BUT there is a new drug that should be coming out by end of this year called RUSFERTIDE? It tricks the bone barrow into making less cells which lessens and sometimes eliminates the need for phlebotomies . Look it up. I’m waiting for it.

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@nypara66

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carolgeo | @carolgeo | Jun 12 12:22pm

I have PV and low iron On HU and baby aspirin.

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