Polycythemia Vera and low iron

Posted by finntastic @finntastic4, Jan 26 10:23am

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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jerrlin | @jerrlin | Jan 27 7:38am

I have Polycythemia Vera with Jak2 an 76 years old and diagnosed 3 yrs ago. My iron levels run low and am considered anemic. Right mow my Hemotologist/ Oncologist put me on iron pills 7 days a month as a trial. I’m also on Jakafi as the hydroxyurea didn’t stop my itching. The Jakafi is a miracle drug for me so far.

janem411 | @janem411 | Jan 27 10:22am

My iron is also very low and I’m anemic from phlebotomies at 5. I’m on Besremi and low dose aspirin. I have never taken hydroxyurea. My hematologist/oncologist prescribed iron every other day, but my MPN specials says no! On the other hand, both doctors encourage consuming iron-rich foods, cooking in cast iron, etc. It’s apparently the supplements that concern them. But as PV patients, we sure do feel the iron deficiency in our attempts to “keep moving”. I wish they’d figure out this piece of the puzzle with some true consensus.

adamgriffin | @adamgriffin | Jan 27 11:35am

Similar to you. High hematocrit and hemoglobin. I'm only getting treated by phlebotomy every two weeks at this point. No problems there. I'm a poor candidate for HU as only my RBC production is really high, and all other levels were normal (HU would suppress everything to levels too low to correct the Hct). Iron is essentially gone or undetectable at this point. I take no iron supplements. I still run about 4 miles once a week, which I enjoy. However, my run times are definitely degraded compared to previous times. I'm trying to stay in mostly a state of ketosis for keeping energy up rather than relying on the sugars and carbs for energy. I think it does help. Definitely not a return to "normal" but enough to stay active most of the day. Be prepared for crazy weight loss if you try it.

finntastic | @finntastic4 | 5 days ago

I started on HU after turning 60. My Hct shots up fast if eating iron rich foods or take supplements with iron (happened once accidentally). I was also wondering if anyone on Besremi or Jakafi still require phlebotomies and therefore continue having low iron.
All the contradicting information on taking /not taking iron is frustrating. It definitely affects my exercising, but got to keep moving!

rmegg | @rmegg | 4 days ago

In reply to @finntastic4 "I started on HU after turning 60. My Hct shots up fast if eating iron rich..." + (show)

I also suffer from low iron after many phlebotomies. I had an iron infusion one year ago and
it worked for a while. I now take iron 3x a week. I have polycythemia but not Jak2. The iron appears to be working. The symptoms of fatigue make life very difficult.

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