Patient Comments: Polycythemia - Symptoms


What were the symptoms of your polycythemia? Submit Your Comment

Comment from: maggie, 75 or over Female (Patient) Published: October 03

I was unaware I had polycythemia. I was told after a blood count. I have had 2 heart attacks and have stents in my heart and neck for the last 19 years. I have felt ill almost every day, I haven’t had 1 whole week of good health. Since I am 80 years old I sometimes feel I’d be better off dead. We haven’t had sex more than 10 times in that time. I feel like I’ve lost 19 years of my life. I also have acute claudication in my legs which now is in my thighs. I wish someone could wave a magic wand for me.

Comment from: Max, 45-54 Female (Patient) Published: June 13

I have had polycythemia for 3 plus years! I did phlebotomy a lot the first year, and every 3 months the second year, and now about once a year. But the itching is really driving me crazy, I have stage 4 kidney disease and my nephrologist wants me to see a new hematologist since my current one hasn't seemed too concerned about my condition lately.

Comment from: Bob y, 75 or over Male (Patient) Published: February 06

I have two main issues with polycythemia, fatigue and itching, mainly my back. Hydrazine cream for the itching has been a big help. The fatigue factor makes some normal chores difficult, some impossible.

Comment from: Gary, 65-74 Male (Patient) Published: December 16

I have just been diagnosed with polycythemia. I had no symptoms. The condition was detected after my blood work for my annual physical. I am being treated by bloodletting and with hydroxyurea.

Comment from: Andy, 55-64 Male (Patient) Published: August 28

Dear people with polycythemia, I have nearly stopped the itching and other symptoms with something very simple, intermittent fasting. I do a minimum of 14 hours every day. If I eat sugars and the insulin goes up the itching starts.

Comment from: A T J, 65-74 Male (Patient) Published: July 31

I have had polycythemia for 15 years. Until recently I've had a phlebotomy about once a month. Sometimes I am able to go a couple or three months without having one. For the last 4 or 5 months my hematocrit has spiked and runs in the 52 to 57 range. We have always tried to keep it in the 45 range. I've had very little side effects other than occasional blurred vision.

Comment from: Coolhandluke7, 45-54 Male (Patient) Published: February 02

I was diagnosed with polycythemia about a year and a half ago. Main treatment is phlebotomy and baby aspirin. It varies as far as when I go for the phlebotomy. It depends on where my counts are. Other than minor headaches and some dizziness, my quality of life is good. I have no issues sleeping. I exercise every morning and went skiing 3 weeks ago.

Comment from: Colin G, 55-64 Male (Patient) Published: May 30

My symptoms of polycythemia are shortness of breath, taste of iron in my mouth (sour), and lower back pain over kidneys.

Comment from: daveyboy, 55-64 Male (Patient) Published: April 16

The symptoms of my polycythemia are fatigue, phlebotomy, headaches, and quality of life declining.

Comment from: Fran, 75 or over Female (Patient) Published: October 15

It was discovered about 3 years ago that I had polycythemia vera. I suffer with severe nose bleeds, skin itch and now it appears that I have frequent phlebitis (this I am not sure is connected to PV). I am in my 80's and I have had 2 different cancers within the last 3 years, but both in remission. I have a phlebotomy once a month. Except for the phlebitis and night sweats I have a good appetite and good energy.

Comment from: kk, 45-54 Female (Patient) Published: April 17

I have had polycythemia for about two years. At first, I was first treated with an aspirin a day to keep my blood thin so I won’t clot. Now I have to have phlebotomy once every two weeks. I also was worried like crazy about the disease, but I get my treatment at a cancer center and the patients there keep me in good spirits.


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