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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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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.
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....
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1 ReactionMy 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?
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1 ReactionMy Dr is at Mayo too. I will check with him. If you don’t mind me asking do you have PV also?
Yes, PV. I see Dr. Jeanne Palmer.
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.
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1 ReactionI have a ten of hematologists. It could be MDS disease. but not sure.
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.
@jerrlin
Diagnosed with PV 10 years ago. I am now 75 yrs old. Its been a roller coaster for me with PV. I have gone as long as 2 years without a phlebotomy but now it seems I need one almost every 6 months. Hydroxyurea has pretty much been a "bust" for me as itching continued and lab levels did not improve. The Hydrea at 500 mg/day also led to patches of skin cancer on my face.
I would love to agree with you on Jakafi, as when I was on it (almost 2 years) I required no phlebotomies. Unfortunately, it led to skin cancer and several MOHS procedures.
I understand there is a new drug called Rusfertide that is more effective than the Hydrea.
I have very low iron levels (Ferritin of 9) but my hematologist does not recommend iron supplements. Let's face it. There are far worse cancers but PV is a very challenging disorder that will affect your life style. Just have my fingers crossed that we can all avoid Mylelofibrosis or leukemia.
I can't think of a more diabolical way to sabotage the body than to "infiltrate" the blood supply that provides oxygen to all major organs including the heart and brain.
Splenomegaly is another thing that my heamatologist watches carefully. The out of whack spleen is the "core" problem here. I don't know if the hematologists understand it as well as they should. In other words what is the factor that is causing it to malfunction?
Hang in there. We can manage this disease somehow.
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1 Reaction@esque
As I understand it you need to be tested for the JAK2 gene factor. If you test positive, it is another confirmation of P.V.