Patient Comments: Polycythemia (High Red Blood Cell Count) - Cause

What was the cause of your high red blood cell count (polycythemia)?

Comment from: minna, 65-74 Female (Patient) Published: May 09

I have been diagnosed for a couple of years with primary PV with the Jak2 mutation. I at first often had very red, bloody eyes. If I wiped the corners, the tissue came away with a bit of blood. Anyone out there with red eyes to the extreme should be tested with a CBC. I now know, that was one of the first symptoms of PV for me. Also, my tan was very reddish all over my body. Now, if my blood count goes too high, it is sometimes caused by some med I've been taking for pain, or an antibiotic; cause the meds sometimes cause a urinary tract infection, and this makes my blood count get too high. It happened last month, and now my eyes are red. I am going for a phlebotomy today. I've learned that red eyes are a sign that I need a phleb. My right eye is worse, and is entirely red, to the extreme. Hope this helps others.

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Comment from: GG, 65-74 Female (Patient) Published: July 12

My mother had PC and now I have been diagnosed with it. She passed away at age 83 after having it for five years. She was on Hydrea the last few years. We think that she quit taking the hydrea the last few months and she passed away with a massive blood clot. I have been undergoing phlebotomies for the last three months and seem to be doing well. From all I have read it seems that it is much better to do the phlebotomy rather than the Hydrea.

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Comment from: petero, 45-54 Male (Patient) Published: May 19

I found out that I had polycythemia more than 10 years ago. I am nearly 50 now, but my blood count is erratic. It can be fine for a few months and then escalate rapidly. It varies weekly and quarterly. I used to smoke, but apparently this is unlikely to be the cause. I do get really tired at times, but I just have to live with it. No one else in my family suffers from this condition, but both my parents died from heart attacks. That might be a connection, my consultant says; maybe, maybe not. I wish I could avoid all the hospital appointments.

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Comment from: Ian, 45-54 Male (Patient) Published: September 08

My problem was discovered during a search for the cause of severe back pains. The doctor and even a neurosurgeon had exhausted all the obvious. A blood test then revealed a highly elevated red cell count and when questioning me about my lifestyle, we found that I had many symptoms of secondary polycythemia. These included disturbed sleep, fluctuating blood sugar levels, bronchial infections, etc. At 48 years old, I was really glad this was found, as I have lost most of my family to chronic heart disease.

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Comment from: couldbfishin, 55-64 Male (Patient) Published: August 15

I am a 57 year old male who has never smoked. About three years ago my doctor told me the reason I was tired was that my testosterone (T) level was 26, the lowest he had ever seen. After a few months of rubbing cream on my shoulders, my T level had gone up only a few points, and remained way below normal for my age (600-700). After about a year of testosterone injections, my T level averaging about normal for my age, but I was tired once again. Blood tests showed I had high hematocrit and RBC counts and I was diagnosed with secondary polycythemia. I have been undergoing therapeutic phlebotomies for about two years and it seems to help. I started three times a week, then twice a week, then once a week, now I go every 3-4 weeks for a CBC and phlebotomy if my hematocrit is over 50. I felt a little sorry for myself a couple of times, but meeting people with cancer at the oncology clinic where my hematologist practices, cured me of that. Now I see my phlebotomies as a chance to meet some real nice people and to make them laugh for a while.

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Comment from: Elaine, 65-74 Male (Caregiver) Published: December 20

My husband's polycythemia was due to high platelet count, and he was found to have kidney cancer. The kidney was removed with no chemo or radiation. He is on hydroxyurea and has blood drawn periodically. He is 73.

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Comment from: 45-54 Male (Patient) Published: February 06

I am a 45 year former pro athlete who was recently diagnosed with polycythemia. My hematocrit was higher than my doctor has ever seen, and I'm lucky to be alive. I had a DVT and a Pulmonary Embolism, but survived both of those 4 years ago. I am awaiting my first trip to the hematology doctor to get some blood taken.

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Polycythemia - Experience Question: Please describe your experience with polycythemia.
Polycythemia - Symptoms Question: What were the symptoms of your polycythemia?
Polycythemia - Treatment Question: What was the treatment for your polycythemia?

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