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

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

Comment from: DBoe, 55-64 Male (Patient) Published: May 01

My polycythemia has pushed me into thrombocythemia, too many platelets. I have had a blood clot and a stroke and I am thankful I can still work and live. This is also due to a Jak2 defect that causes my bone marrow to make too many red cells and the platelets try to keep up. When I had my stroke 14 years ago, my blood was thicker than Karo syrup.

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Comment from: Chuck, 45-54 Male (Patient) Published: April 01

Jak2 gene mutation was the cause of my polycythemia. I have flushed face, headache, red eyes, dizziness, hard time concentrating, fatigue, double vision and a pain/weakness in left arm. First diagnosis was migraines but treatment didn"t help. After further blood tests it was found that I have elevated red and white blood cells. Tests revealed it was primary polycythemia vera due to the Jak2 gene mutation. Interesting fact about that gene is its proper function is to turn your bone marrow on when you have a trauma like a loss of blood to quickly make up the difference of lost blood cells that"s why it produces both white and red.

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Comment from: Shanna, 45-54 Female (Patient) Published: October 15

My polycythemia is secondary to Sleep Apnea. I now use a C-PAP machine and oxygen at night and my RBC stays pretty normal.

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Comment from: Jules, 55-64 Male (Patient) Published: August 31

We don't have confirmation of lung cancer yet as my 57 year old husband is going to CT scan on 23rd September. He went to the general physician (GP) as he had lost around 20 pounds in weight since beginning of summer and over the past 4 to 6 weeks some drastic muscle wasting. He wouldn't go to the doctors so I basically made the appointment and forced him. He said GP sent for bloodwork and referred to an oncologist. He doesn't have any other symptoms, just occasional whistle sound when he sleeps. I am more worried than he is and he just dismisses anything serious!

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Comment from: Barb, 55-64 Male (Caregiver) Published: March 28

The doctor found too many red blood cells in my husband"s last physical. It is due to excessive alcohol over decades of abuse. The doctor says it can be reversed if my husband stops drinking. He also smokes. Does he care? No. Did he stop? No.

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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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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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