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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nork1254 | @nork1254 | Jun 4, 2025

I’ve been getting phlebotomy every two weeks. I’ve just been switched to every three weeks. Symptoms are common with my Lupus symptoms. The posts by others are very helpful.

jackiecarey | @jackiecarey | Jun 5, 2025

In reply to @esque "I have had elevated RBC (6.12)but in the last three months this went to 6.44 and..." + (show)

Yes definitely as soon as you can..see a hematologist ...Who ordered this lab work and what have they said? What are your platelets? As soon as you can see a hemotologist your lab numbers are clearly not right....

christina3444 | @christina3444 | Jun 5, 2025

In reply to @finntastic4 "Wow, I am jealous. 8-9 months between phlebotomies, that’s great! Mine are every 6-12 weeks. But..." + (show)

My doctor at Mayo increased my HU dosage from 500mg to 1000mg on my first visit and added folic acid Rx. After about a year the PA suggested I discontinue the Folic Acid because iron level was steady and OK. I told her I would rather stay on it since I was doing well and didn’t want to change what was working.
Maybe try Folic Acid?

finntastic | @finntastic4 | Jun 5, 2025

In reply to @christina3444 "My doctor at Mayo increased my HU dosage from 500mg to 1000mg on my first visit..." + (show)

My Dr is at Mayo too. I will check with him. If you don’t mind me asking do you have PV also?

christina3444 | @christina3444 | Jun 5, 2025

In reply to @finntastic4 "My Dr is at Mayo too. I will check with him. If you don’t mind me..." + (show)

Yes, PV. I see Dr. Jeanne Palmer.

esque | @esque | Jun 7, 2025

In reply to @jackiecarey "Yes definitely as soon as you can..see a hematologist ...Who ordered this lab work and what..." + (show)

My hematologist just ordered 9 different blood tests. He is checking for polycythemias. I have had microcitic Erythrocytosis ever since I can remember but these high levels of red cells and HCT are new. I should know more by the end of the week.
The labs were ordered by my cardiologist.

golferpat47 | @golferpat47 | Jun 8, 2025

In reply to @jackiecarey "Yes definitely as soon as you can..see a hematologist ...Who ordered this lab work and what..." + (show)

I have a ten of hematologists. It could be MDS disease. but not sure.

golferpat47 | @golferpat47 | Jun 8, 2025

In reply to @finntastic4 "My Dr is at Mayo too. I will check with him. If you don’t mind me..." + (show)

No , my team of hematologists think it might be MDS disease but want a third bone marrow tests show biopsy to see if the can confirm this.

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