Patient Comments: Polycythemia - Experience

Please describe your experience with polycythemia.

Comment from: Connie, 65-74 Female (Patient) Published: July 28

I am on my 20th year with polycythemia, but my whole system has switched. I used to have phlebotomies, and now I am just on the hydroxyurea pill 1500 mg 4 times a week and 2000 mg 3 times a week. It is bringing down all my other counts, but I have to take it because of the high platelet count. There is nothing more they can do for me other than a blood transfusion. My hemoglobin has to go down to 70, before I will get that. It is at 81 now. I am tired all the time. I do sleep a lot, as oxygen is not being carried through my body like it should be. I am a 73 years old female. If there was only some other medication to just bring down the platelets. Anyhow, I struggle on. I have no pain, and it could be worse. Now, my bone marrow has quit producing red blood cells. That is no good; sort of opposite of polycythemia.

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Comment from: Darren, 45-54 Male (Patient) Published: January 13

The pains I experience myself are pains in my joints and legs, fatigue, dizziness, pains in my feet, difficulty breathing, and low blood pressure. During my phlebotomies I have crashed as my blood pressure drop to critical levels. Even before the blood withdraws start my blood pressure is already low. I believe that this polycythemia has caused me to have a mild stroke and very mild heart attack. This disorder I don't wish on anyone at all because it limits what you can physically do every day.

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Comment from: T. Cole, 45-54 Male (Patient) Published: August 27

I've had polycythemia for over 10 years. I received phlebotomies every 3 to 4 months or when my RBC count is over 50 and I take an aspirin once daily. I frequently have night sweats, difficult sleeping, fatigue, upper stomach fullness due to an enlarged spleen. However, I have lower-back pains near my kidneys which affect me after standing longer than 30 minutes.

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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: Nervous, 35-44 Female (Patient) Published: June 28

I donated blood on May 28th, my iron level was 17.8. Exactly 3 weeks later I went to my primary care physician and it was 18.1. I kept telling him I felt bad. I was having palpitations, pitted edema in my legs, and shortness of breath. Now I am itchy and tired all the time. My 1st appointment with the hematologist is on Monday and quite frankly I can't wait to get some answers.

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