Patient Comments: Polycythemia - Experience


Please describe your experience with polycythemia. Submit Your Comment

Comment from: Gwen, 25-34 Female (Patient) Published: May 29

Recently I felt really unwell (headaches, nausea, loss of appetite, fatigue and dizziness). I'm disabled due to Ehlers-Danlos syndrome which caused a spinal cord injury, lung issues, bowel issues, etc., so the latest issues was a real concern. I’ve just discovered that last year my RBC and hematocrit levels were consistently too high (4 tests); yet classed as borderline polycythemia, so I was not told. Not sure if that is a common issue. I can’t believe it was ignored.

Comment from: Skyking, 55-64 (Patient) Published: January 07

I am 57 years old and have polycythemia. I have been on testosterone for a number of years. I have been in the hospital 3 times with severe hypertension. I started having a strange tingling in my face, arms and legs, as well as severe itching and red face and legs. The emergency room doctors thought I was on drugs to have these symptoms. I had the drug test and he was surprised I was all negative. I gave blood at the infusion center, and the nurse said she has never seen blood so thick. When your blood is that thick you feel you are walking with concreate in your legs.

Comment from: HPM, 55-64 Male (Patient) Published: October 16

I was diagnosed as having polycythemia vera about 10 years ago. Now waiting to see if it has switched to leukemia. I had bruising, nosebleeds, itching, bloodshot eyes, and shortness of breath. I have managed with blood donations at Red Cross. Now not sure what the next steps will be.

Comment from: Hazel, 75 or over Female (Patient) Published: August 21

I have had polycythemia, for about 10 years. I worked in dry cleaning plants for 47 years, and I do believe the cleaning solution used in washing the clothes is the cause, something like radiation orange. I have been taking hydroxyurea for 10 years, now I am so weak and I can’t walk, and my back and legs just kill me. I am 82 years old now, and life is not worth living,

Comment from: John, 45-54 Male (Patient) Published: April 02

I was diagnosed with polycythemia vera in 2007 but all the tests were negative, i.e., erythropoietin, spleen, bone marrow, liver, kidney and Jak2, etc. Even then, doctors are taking it as polycythemia vera. The doctor has advised me to maintain my hematocrit up to 45. I have to go for phlebotomy in a month or two. I am taking aspirin every day.

Comment from: Urscat , 35-44 Female (Patient) Published: October 09

I was diagnosed with polycythemia after I had been rushed to hospital with a blood clot in my portal vein. I take blood thinners as well as 500 mg of hydroxyurea and have had a bone marrow biopsy. Some days I feel horrible and it is hard to function, with headaches, nausea and fatigue. Now I've been diagnosed with esophageal/gastric varices and because of where the clot is, I have to have more medication and some banding.

Comment from: Sanddancer, 55-64 Female (Patient) Published: September 07

I was diagnosed with polycythemia vera (PRV), and I am 3 months into this journey. I was having symptoms which I didn't recognize, - pains in my spleen, feet burning, enlarged toe knuckles, headaches, night sweats, skin itching (minimal), blurred vision and tiredness. A blood test revealed PRV due to Jak 2. My treatment includes Hydroxia 100 mg a day and fortnightly phlebotomies. Next month I am having a bone biopsy as a precaution. I am not happy about this but I am happy it has been discovered giving me a chance to fight it.

Comment from: Summerfield, 55-64 Female (Patient) Published: July 10

I was diagnosed with polycythemia rubra vera when I was 39. I have very thick blood like a milk shake, and high platelets. I have a red face although my skin is brown. I do a lot of yawning even if I am not sleepy maybe because I lack oxygen. I was given Hydrea and aspirin. I had phlebotomy 5 times. It is now 18 years ago, thank goodness, but I am still hanging in there. Recently I had bruises, I hope that it is not going to be leukemia.

Comment from: Den1987gb, 25-34 Male (Patient) Published: April 26

I am 31 and have had polycythemia now for 2 years and my reading is 192 on the hemoglobin. I have also got kidney stones, hypothyroidism, underactive thyroid, anxiety and panic attacks, and generalized anxiety disorder. I have trouble walking because of the bone marrow in the legs and the red blood cells. I went to the hematologist today and he said that if I don’t give up smoking and lose weight I will have to have blood removed venesection. I gave up smoking for two years previously so will have to give up again. I just find it hard with the kidney stones at the moment.

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.

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.

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.

Comment from: ron-ron, 45-54 Female (Patient) Published: January 30

My doctor told me I have polycythemia but insists it is from smoking. I quit smoking but numbers continue to go up. At one visit he stated if it went up next visit I would be admitted for phlebotomy. Well, it went up and he didn't admit me. I am confused and would love to know if this is something to worry about!

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.

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.

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.

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.

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.

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.