Patient Comments: Polycythemia - Treatment


What was the treatment for your polycythemia? Submit Your Comment

Comment from: Stubbornmom , 55-64 Female (Patient) Published: January 22

My case is a bit different as I’m factor VII deficient and low factor VIII. I was diagnosed with polycythemia last year. Apparently the previous doctor ignored the high RBC, hematocrit and hemoglobin. February 26, 2019, I suffered a spontaneous large, extensive subarachnoid hemorrhage not caused by an aneurism. In the hospital I had my 1st phlebotomy. Four months later I had another phlebotomy. Last month my RBC was high, but my hematocrit and hemoglobin were high normal; so far the phlebotomy is working.

Comment from: Rick, 65-74 Male (Caregiver) Published: May 09

I was diagnosed 4 months ago with polycythemia vera, discovered when I had emergency surgery for star burst fracture of L2. My treatment was phlebotomy and hydroxyurea. This is what I expect to do for the rest of my life. I am trying to get my iron levels down with Qunol turmeric. I just read an article that cabbage helps, so I am starting to eat a lot of cabbage. For those doing regular phlebotomies I found you can get prescription from the doctor and get treatment done free at Blood Connection and to save cost on costly lab work get doctor’s prescription and you can get CBC with differential for USD 30 at LabCorp.

Comment from: Karan evans , 55-64 Female (Patient) Published: May 07

I have been told I have pseudo polycythemia which requires no further treatment other than aspirin. I am not happy with this as I have just spent 3 days of feeling like I am going to pass out, having all the usual sensations. I wonder if my doctors should be doing more. I'm 61, and am taking blood pressure medicines. I have never smoked, I think I am fit, e.g., I walk for an hour and a half each day with my dogs. I can swim crawl up to a mile in 45 minutes no problem, 2 to 3 times a week. I just don't know why this has happened. It's really depressing me. I wonder if drinking alcohol also plays a part in my fainting, plus lack of sleep.

Comment from: JPB53, (Patient) Published: December 05

My polycythemia vera was discovered over 5 years ago by my oncologist during a bone marrow test for lymphoma. I've been having phlebotomies for over 5 years and taking hydroxyurea along with a low dose aspirin during this time. I am taking blood pressure medications as well and were on these before the cancers were found. I also experienced gout a couple of times a year due to uric acid buildup. I am fortunate in that my oncologist ran the test on a hunch with the bone marrow. I believe it has saved my life. The lymphoma is under control at the present time so I don't have to undergo chemotherapy.

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

I was detected as having polycythemia vera (PV) about 9/10 months ago and the hemoglobin count had gone up to 21.9. I had to go for phlebotomy about 9 times almost in continued succession and another time after 4 months as hematocrit level went to 45.5. As an Indian maybe the upper limits the doctors check here are far lower i.e. 12-16 for hemoglobin and 41-45 for hematocrit. Due to the treatment with hydroxyurea capsules and blood thinning tablets I am giving blood only when higher levels are breached. However on phlebotomy there is severe weakness and debility. This makes even, walking a problem due to continued pain in all joints. This has also caused sexual debility. I have heard of Levical, an herbal drug made in Belgium. Reported to be an effective controller of blood parameters.

Comment from: TooYoung?, 45-54 Female (Patient) Published: October 24

I am a middle aged female who has been just diagnosed with polycythemia vera (PV). I just switched physicians as my last doctor tried diagnosing me with hemochromatosis. He was wrong. I also have Hashimoto's hypothyroidism. I was a smoker too. I have just about all PV symptoms: fatigue, sleeplessness, overall weakness, burning sensations in my hands/feet, overall bodily numbness, and lack of concentration. Other symptoms are menopause, night sweats, body aches, itchy skin, and headaches. I will be following up with my new doctor in 2 months. I am worried that I should be seen earlier than December 2017. ADLs (activities of daily living) are hard to achieve on my own. I have been in and out of work over the past 2 years. I am not going through any treatments to date, but I do rely on Advil, baby aspirin, and/or Benadryl to help with headaches breathing, and itchy skin.


Sickle cell disease is named after a farming tool. See Answer