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

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

Comment from: map, 45-54 Female (Patient) Published: February 11

Fibroids were the cause of my high red blood cell count (polycythemia). There were 17 of them but the primary one was very large with a stalk (pedunculated), which was the main trouble maker.

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Comment from: DLWSr, 55-64 Male (Patient) Published: July 30

The doctors discovered my polycythemia vera (PV) 5 years ago after being hospitalized and treated 4 times for an aneurysm and heart attacks. The aneurysm was glued shut and they looked at numerous blood counts and finally realized I had a history of high red cell counts. I was given hydroxyurea and phlebotomies of a pint to 500 ml every 4 to 6 weeks. I eventually had a biopsy of my bone marrow done and was prescribed Pegasys interferon injections every week in my abdomen. My counts have stabilized and I no longer need phlebotomies but now suffer from fatigue and other issues that may or may not be attributed to the Pegasys. I had to medically retire due to a number of medical issues and unable to work. My depression from PTSD (post-traumatic stress disorder) and MST have failed to get better as I have found out that Pegasys may be making my depression worse. Although I am happy I no longer require phlebotomies I see that my wife and I must keep constant awareness of the side effects of the interferon injections.

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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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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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