Patient Comments: Polycythemia - Experience

Please describe your experience with polycythemia.

Comment from: bullard, 25-34 Female (Patient) Published: February 04

I have been sick now for about two months. I have extreme pain that starts at the top of my ribs and goes into my back. I find now that it is constant stomach pain and every time I eat I feel very sick. I have been hospitalized twice with kidney stones and have had a high blood count for a long time. The doctors don't seem to listen to me and just try and give me pain medication witch I don't like to take. I feel lost on what to do. I am always sick and feel run down I feel bad for my family.

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Comment from: pv, 45-54 Female (Patient) Published: June 05

During my first phlebotomy for polycythemia vera (PV), my heart stopped for a bit, subsequent testing diagnosed/confirmed bradycardia. Cardiologist has not forbidden phlebotomy for PV treatment, has suggested some changes in the way it's done. The hematologist/oncologist does not want to do it again, wants to start hydroxyurea. I would prefer trying phlebotomy with precautions suggested by cardiologists.

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Comment from: Wes, 55-64 Female (Patient) Published: November 20

I have polycythemia vera with many of the symptoms, particularly intolerable itchy skin. I take histamine blockers such as Reactine and Benadryl. I also take Singulair. I recently started Paxil for the itchiness and it works for me. I started at 12.5mg and noticed a mild benefit and decided to go up to the next dose of 25mg, a remarkable difference.

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Comment from: Aldric, 65-74 Male (Patient) Published: August 23

I was officially diagnosed with polycythemia at age 55. My blood count was at 191. I had no symptoms except for the fact that I had incredible energy and could not sleep. I was never tired. Once discovered, I had bloodletting every week for a few months. I could have had this problem for a long time. At age 23, I had a medical exam and the doctor said that I had a high blood count. She never told me what it meant or what could be done.

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Comment from: Michie, 55-64 Female (Patient) Published: August 14

I have had polycythemia for about ten years. Two symptoms cause me some difficulty; my skin gets extremely sensitive and very itchy and my enlarged spleen is pressing against my stomach causing me to feel full. I've lost one quarter of my body weight in four months! However, I do feel very well, I work full time as a high school teacher and go for phlebotomies every few months. Does anyone else experience the itchiness and loss of appetite.

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Comment from: bob Johnson, 55-64 Male (Patient) Published: May 06

About six months after having TLIF back surgery with three fusions, I developed polycythemia (18.7) red blood cell count; I have had a unit of blood drawn from me every month for a year now. This last blood draw took about 1 ½ hours to get the syrup (blood) out? It's getting worse, plus I have bradycardia (41-50) BPM. I see an oncologist this week. I believe the surgery did this to me, because infusion bone growth is in a recall now. Also I believe the FDA never approved the infusion bone growth product.

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Comment from: Nadine, 35-44 Female (Patient) Published: April 25

I got diagnosed at age 30. Two years later I got two blood clots in my liver and spleen. I also got thrombosis and a vagus vein in my stomach, which they had to band. I have four kids. I don't know how long I will have this for – so far it's been nine years.

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Polycythemia (High Red Blood Cell Count) - Cause Question: What was the cause of your high red blood cell count (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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