What is polycythemia vera?
Polycythemia vera is a type of health condition that results from an increased level of circulating RBCs or red blood cells in the bloodstream. A person known to suffer this kind of health problem exhibits increased levels of hematocrit, hemoglobin and/ or red blood cell count which is more than the maximum normal limit. A condition is usually classified as polycythemia vera basing on the level of the hematocrit and the hemoglobin of the person.
Once an individual has polycythemia vera, the hematocrit level is said to be more than or greater than 48% in women and 52% in men. The hemoglobin level, on the other hand, in polycythemia vera patients have a measurement that is more than 16.5 g/dL in women and more than 18.5 g/dL in men.
In addition to these, polycythemia vera is also divided into two categories namely the primary and the secondary. In the primary type of polycythemia vera, the increase of red blood cells is caused by the inherent problems in the process of RBC or red blood cell production in the body. However, the secondary kind of polysythemia level generally occurs as a reaction or a response to other factors or causative conditions that enhances the production of the red blood cells in the blood. Normally, red blood cell production or otherwise known as erythropoiesis takes place in the bone marrow through a complex process or regulated steps. The main regulator that plays a huge role in the RBC production is a hormone called erythropoietin or EPO. This hormone is mainly secreted or produced by the kidneys; nevertheless, approximately 10% of the total amount of EPO in the body is also created by the liver.
The body normally regulated the secretion of this hormone in order to maintain the normal levels of RBC in the body. This is usually increased only as a response to certain health problems such as low oxygen levels in the blood or medically known as hypoxia. This response is the body’s way to compensate with the low oxygen levels since O2 can be carried to the different tissues of the body once the RBC production is stimulated by the EPO.
Although polycythemia vera can happen to anyone, most cases are seen in children as well as in newborns. In fact, neonatal polycythemia can happen to 1 to 5 percent of all newborn. This is commonly a result from transfusion of blood, the transfer of placental blood to the infant post delivery and/or the chronic and inadequate oxygenation of the fetus (medically known as intrauterine hypoxia), which is usually a result from placental insufficiency.
How to prevent polycythemia?
Polycythemia can be prevented depending on the type as well as the factors that have caused the problem to occur. Polcythemia vera that occurred as a result from long standing smoking and/or exposure to hazardous gases such as carbon monoxide can definitely be prevented once these risk factors are alleviated. Aside from this, reducing also the risk factors that can cause heart failure such as high blood pressure and DM or diabetes mellitus can also be effective in reducing the chances of having polycythemia. Nevertheless, those conditions that are congenital in origin and are classified as primary polycythemia disorder are already considered not preventable.
What is the polycythemia vera life expectancy?
The prognosis or the outlook of a disease actually depends on a lot of factors. In case of polycythemia vera, the prognosis basically depends on the underlying cause of the problem. In general, the outlook is considered favorable for people who are experiencing secondary types of polycythemia vera cases. On the other hand, the prognosis of primary polycythemia vera is considered fair even though it is considered incurable and long standing for some cases. This is due to it being a controllable and treatable condition.
If untreated, the condition has a poor prognosis with a life expectancy rate of only a few years from the time of diagnosis. However, with the advancement of research and breakthroughs of medical technology, the life expectancy of polycythemia vera sufferers has greatly improved, with most patients now enjoying a normal life span. Typically, this is achieved with continuous phlebotomy treatment, the use of medications such as Hydroxyurea to reduce the RBC, Aspirin to thin the blood and reduce the risk of blood clots, as well as other interventions for this condition. Also, some of the debilitating symptoms and associated conditions (e.g., erythromelalgia) can be relieved by suitable medication/treatment, e.g., Aspirin can relieve the bone pain and burning feelings that some patients experience, and for those with excessive itching, doctors may prescribe antihistamines
These are just some of the important facts and details with regards to the condition known as polycythemia vera. Rare and complex diseases are still possible to manage and treat as long as the right and proper interventions and treatment are given immediately. For those who wish to share their story and support with others, the MPN website has lists of peer-to-peer, online and in-person support groups.
Books about polycythemia vera
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Michael Varley says
I have had PV for two years. Phlebotomies were the norm every 2 months. I found that if I varied the dose
1000mg (2) one week; one in the am and one in the evening, and 1500mg (3); two in the am and one in the evening. in alternating weekly fashion, stabilized the HCT very well. Aspirin is taken every day. I haven’t had a phlebbotomy in a year. I sincerely hope this helps.
Thelma McGillivray says
Hi- I was diagnosed with PRV in 1997…experienced a stroke in 2002, fully recovered with hospitalization x 3wks including rehab, then put on hydrea from 500mg daily upped now to 1000mg daily. Over time I have been followed and received excellent care at our cancer hospital, see my Dr. every two months, monitored very closely.Overall I have had excellent health, but recently have difficulty walking further than a block, Achilles, calves ache, not sure if muscle ache or bone pain – recently developed pneumonia a second time in less than a year, on antibiotics which will clear it up, I am sure of that, but really wonder about my calcium levels. I take daily, a proton drug to protect my stomach from the hydrea, which high doses of aspirin when I was initially diagnosed cause a stomach ulcer, changed Drs. but daily on the proton in the a.m. and another one before bed. I also take 2 81mg aspirin daily, 12mg hypertension daily, and vitamins, 2000 D daily, 1000mg Magnesium, reduce jumping legs during the night, Vit C 1000daily,Complex B vitamins to keep up my spirits. My advice, keep active, exercise daily, your diet is very important – high on vegs no red meat, fish, limit hard alcohol, but I daily have a glass of red wine at dinner. I dance, sing with a talented older group, active with the women’s movement, read everything I can to activate my brain, am a political junkie which, while I am Canadian am very interested in the ongoing US election!!! I am an 83 yr old woman, and from intents and purposes will die from normal old age, with some obvious limitations. Best to all of you. Thelma
Stewart says
Thanks for your inspirational story Thelma – and all the best to you. Stewart 🙂
Robert Tollen says
Since 1994, our MPD-SUPPORT web site http://www.mpdsupport.org and free support email list offers interesting information on chronic myelogenous leukemia, polycythemia vera, essential thrombocythemia, agnogenic myeloid metaplasia, myelodysplasia, and myelofibrosis.
Anyone – patient, family member, or health professional, is welcome to join
our growing list of subscribers. Our archives are available for you to
research information.
Verla Ryder says
HOW does one subscribe to the http://www.mpdsupport.org email list? Need STEP BY STEP procedures.
Stewart says
Hi Verla.
There’s a “Click here to join” button at: https://sites.google.com/site/mpdsupport/
Peggy says
Jack was diagnosed with P Vera in1998 , he was 44,he lived well for 16 yrs. he took hydrea and blood thinners. In 2014 the disease mutated into AML he died 90 days later. Ask your doctors about this and be aware of things that can happen, to late for my Jack but not for you. Good Luck and God bless you all.
Jim Barnett says
I was diagnosed with PV one year ago at age 71. I am on Hydrea and two phelbotomies once a quarter. These treatments keeps my red and white cells in the proper range. I am healty and plan to live a long time. This disease has to be managed daily to prevent to high a count of red and whte cells which can cause a stroke or heart attack. There is a 15% chance for anyone with PV that it can change into a very virulent form of leukemia that is difficult to control. You wil know it when your quarterly blood tests show too low a white cell count instead of too high a white cell count. Eventually ones bone marrow will scar over and the body will not be able to produce red and white blookd cells. You will then die in 2-36 months with continous treatment of an infection. So people with PV can live 15-20 years after it is discovered. Perhaps over that time research will come up with a cure. Most likely you will die of something else before the PV kills you. Good luck.
Peggy says
When I had stroke three years ago on the 5th of December 2015. When it happened CV it I was devastated. My whole word just fell apart, I would go to my DR with all the symptoms if he would of just did something. Now I have one of carotid that is thrombosis and they are checking one the other and say it not 50%, by the way I was only 55 when it happened.
Eric says
Thanks everyone for the positive words. I was recently diagnosed with PV at 42. I knew there was something amiss over the last few years. Now, I know.
Teri says
I was diagnosed with primary thrombocythemia in 1982 at age 22 and then it became polycythemia vera in 1991. A year ago the bone marrow biopsy showed the beginning of mylofibrosis. I had to have my spleen removed in 1998 and since then I’ve been on hydrea. For the past 7 months I have also been on interferon and have occasional phlebotomy done. Now I’m starting to experience bone pain. I’m so tired of it all but am thankful the once thought life expectancy is much longer. If anyone out there had heard of a new treatment I’d like to hear about it!
Teri
Houston, Texas
Stewart says
Thanks for sharing your story Teri. I don’t know if you have tried it, but this website has some support groups whose members might have ideas about new treatment – http://www.mpnresearchfoundation.org/Support-Groups
All the best Teri 🙂
Robert Sills says
I have had Polycythemia Vera almost 30 years, am a body builder, have not have a blood letting in almost 2 years. I am 67. I did have a lot of clots and Embolism when I first got it. I have a number of things I have taken that is no allowed in the USA, but my doctor allows it here. Change of diet and where I was living has added to my better health.
Teri, I can tell you all kinds of things you can take that will help, plus exercise and diet. I am not in the USA, and they would not really let me take any supplements when I was having DVT problems. I did not have a clot in 15 years, and the past two years has been the best based on things I researched and helped myself.
Frank Gilbert says
Hi:
I was diagnosed with polycythemia Vera about a year ago. My red blood count is high as well as my HCT levels. I was also found to have the JAK-2 gene which verified PV. I have had blood removed once a week for the last 3 weeks by the VA since I am a veteran. I never have smoked or lived at altitude, which is on the cause list. The VA Doctors say off the record that I may have this disease from the spraying I received (Agent Orange) in Vietnam. My face has red splotches, my bones ache, my fingers and toes are often numb. I have low energy and get out of breath from light work in my yard. I am 67. I feel the Dr’s really don’t know what to do with me. I take an 81 baby aspiron every day. What else can I do?
mary jane mendoza says
I was diagnosed with polycythemia vera in 2009. I take hydrozy urea and undergo phlebotimies sometimes twice or thrice a year.
I would like to join any group with the same ailment so I can have a support group.
Please refer me to them. I am 58 years old now.
Stewart says
Thanks for sharing your story Mary Jane. I don’t know if you have tried it, but this website has some support groups which you might like to join – http://www.mpnresearchfoundation.org/Support-Groups
All the best to you MaryJane 🙂
Maureen Savoie says
Thank you for the information. I have just been diagnosed with polycythemia vera (don’t know whether it is primary or secondary) but will ask on the 12 June 2014. Your information was comforting for us. Thank you. Hope that all is still going well for your husband.
Laura says
I was diagnosed with PV 11 years ago at the age of 34. I am a female and have been healthy my whole life. At first it was treated with iron and phlebotomies; but that did not control my counts. I was put on Hydrea over 10 years ago and am doing very good. I see my hematologist every 4 months and have just recently reduced the amount of Hydrea that I take. I live a normal, healthy life and my life expectancy looks good. It’s important to have a physician monitor you, but with med compliance and regular checks on your blood, you can live a good and “normal” life.
jessie says
My dad was diagnosed with PV about 6 months ago he is 68 yrs old. we r trying to cope and find answers and prepare for what is next. He did bloodletting, but his platelets are too high for them to continue, as a result they have on hydoxea. If anyone has some advice or just someone that knows how it feels to feel in the dark. thank u.
Ronald Seymour says
I am now 75 yrs old and have been using hydroxea for about 15 yrs. I give blood when HCT s over 46, about every 3 mos. I live a very normal life am very active, restore old cars and do woodwork in the fall. I go to Fla. for 3 mos. and fish and snorkel about 4 or 5 days a wk.
Stewart says
Thanks so much for sharing your story Ronald. It certainly gives hope, and relieves a lot of people’s minds about what they can expect after being diagnosed with PV.
All the best with your fishing and snorkelling 🙂
John says
Hi Ronald, my name is John, and it gave me great hope and comfort to read your message. I moved back home to south east PA in January 2008 and immediately checked in with the VA Hospital where I lived and within days was assigned to a primary doctor. The usual tests where done, and on my return a week later, he told me he needed to take more blood from me as they found something unusual. I was asked to come back every 2 weeks for LAB (Blood) After 3 months, the doctor told me I had a blood disorder, it was then that I pulled out my mom’s death certificate which shows the primary reason for her death was, Polysethyemia and immediately I was to take 4 capsules Hydroxyera. My RBC, Platelets and WBC’s were very high. After several months my numbers came down but not enough; however, my medication was reduced to 3 capsules a day. Numbers continued to come down but slowly, and after 3 yrs from my own probing, I was reduced to 2 pills a day…My RBC and Platelets are have remained in normal range and my doctor is very happy, and so am I. My Primary doctor, recommended I do some regular cardio and some strength training and I have done that ever since I was diagnoised….I continue to feel well, but I do feel the effects of the medication, I’m tired a lot, but push myself to workout at a slow pace. I feel out of breath but take it slow and take breaths when going up and down steps. I am in very good physical condition, and look way younger than my stated age. But I must mention that I have been having noticeable tingling sensations in all my toes, the sensation is almost like I have been out in the bitter cold too long and had been wearing cheap sneakers. I tell my primary physician and my Hemotologist about this but they don’t seem that concerned. I continue to make sure I tell them both about these toe sensations every time I have appointments I have both of these appoints coming up next month,, Feb, for Primary, and March for Hemo.
I was wondering if you or others you know have complained about their toes. Thank you and this site for allowing me to find you and reading your message….Thank you…
Brian Kehler says
John, Hello My name is Brian I have just recently been diagnosed with PV and have had three phlebotomies in the last two weeks and I am going for another tomorrow. I have had itching, gout pain in my ankles, and shooting pain through my feet. Ache in general and back pain in my lower back. This started with a blood clot which I thought was a pulled muscle until a doppler proved otherwise then was placed on xarelto to thin blood. But the pain in my feet has gone away since on the thinner.
derek says
I was diagnosed with PV about 12 years ago. I am 68. I take hydroxea 2 tabs 5 days 3 tabs 2 days. I am regularly monitored and have occasional phlebotomy about once or twice a year. I really feel great and am very active and berlieve I will live to a ripe old age. Anyone recently diagnosed take note!
joyce says
I was diagnosed with pv about six weeks ago but believe I have been walking around with it for awhile. Did any one of you get the total bruising of your left arm? Mine bruised from shoulder to wrist. I’m having a lot of pain and burning on my the bottoms of my feet.I am doing the blood donations every thursday .Any feedback would be so appreciated
Mike says
Treatment for low T has caused polycythemia. Will cutting back on low T meds reverse the polycythemia? Am trying monthly blood donations and reduced iron and reduced salt diet first. non smoker and regular exerciser. Drink some alcoholic beverages.
Tim says
I was misdiagnosed with PV about 10 years ago. It is a difficult disorder to diagnose. My physician at the time gave me 5-7 yrs. As it turned out, I was simply dehydrated and have a naturally high RBC count. If you are an endurance athlete I strongly suggest you keep close track of your blood levels over time. You may simply have an abnormal, for the general population, but normal for you blood count..
pat castagna says
I,m not sure as to when my red blood count started to be high, as my dr. never informed me of my platelit..It was diagnosed in 2001 so I could have had it years earlier.. I now have it under control by taking anagrelide….I have had a heart problem since 1974 and have had stents in twice.. It is my theory that my red blood count is high to compensate for lack of oxygyn in my blood..(JUST A THEORY)I can,t complain as I am 80 and still here.
kboag says
Your comments caught my interest…my husband was diagnosed with PV at the same time they told him he needed a mechanical valve to address a defect whereby his aortic valve had 2 flaps instead of 3…the valve was calcifying ….i am thinking that this issue caused my husbands marrow to create too many red blood cells to compensate for the valve issue..and hence PV was seen….now that he has the new valve i wanted them to take him off the hydroxea uria to see if his blood remained normal…they said its highly unlikely that my analogy is correct…but what if it is…he could be taking this medication and not needing it. I’m not a doctor – so I can’t be so sure I am right either…but it just makes sense based on what I have read. You draw a similar analogy.
Samira says
i was diagnosed with polycythemia rubra vera 2months ago thru bone marrow test i was confused n shocked. i ave nt started medication yet am scared pls advice
Izak Lambrechts says
I am living in Stellenbosch about 30 miles from Cape Town in southern part of South Africa. I was diagnosed with PVera about 25 years ago. Apparrently the disease started 1 year or 2 earlier. At the age of 45 years I had a heart attack after a squash match . After 3 months I continued with my career as a university professor in corporate finance at the local university. Since then I was very active in playing tennis, hiking, cycling, fishing and doing business consultations mostly in Johannesburg, 1000 miles from home. Treatment consisted mostly of hydrea (5 x 2; for 5 days per week) and specialists mostly concentrated on the platelet counts which were at very normal numbers for the whole period..
After about 8 years I had a stoke (quite unexpected). My wife was overseas but fortunately we had friends visiting and within 30 minutes I was in hospital. I lost my speech for about 3 weeks as well as my memory. Altough I was working after my retirement age of 60 at that stage I recovered remarkedly well.My memory and speech have recovered very well. At the age of almost 70 I am expectionally healthy, doing all my garden work and sometimes (which I know I must not do) working on the roof of our house.
Treatment is now more extensive: hydrea, agryllin which very expensive in South Africa, puricos (for gout) and disprins Cardio. The specialist focuses on the hemacrit count which must below 44, platement count and hemogl. The most important one is the hemacrit count. Occasionally a bloodlet is necessary. I am not negatively influenced by my medicine at all. At this I am suffering from gout but I believe it is only over the short term.
So: What is my life expectation? At this moment of time I feel like living forever.
Mircea Savu says
Hello Marlyne ,
How old was your huspand when was diagnosticated ?
I am 32 years old and I am suspected of PV .
Thank you
Bonnie Weiss-Mcdonald says
My levels of RBC, Hemoglobin and now hemocratin fluctuate between normal and high. WE are just looking into this.
In 2007 I had a hip replaced due to a torn labrum from race walking. The replaced hip has started to hurt in this last month. I am wondering if the Titanium used to replace the hip could be causing the elevated blood work.
Also in 2009 by blood glucose was 96-it has been 102 for a year now. I’ve been warned off strenuous exercise, but intuitively I feel like I should be working out regularly raising my heart rate.
Any thoughts? Also, would suboxone (post hip surgery) and Klonopin cause a slow down or clumping of RBCs?
Thank you,
Bonnie
Marlyne Rohan says
This is information that is outdated. A person with polycythemia vera can live a normal, or near normal life span. Thirty years ago, some medications (now outdated) were used to control polycythemia, and those medications did indeed limit life span. This is no longer the case, as any physican who specializes in MPNs (myleoproliferative neoplasms) will tell you. My husband was diagnosed with polycythemia vera (not secondary) 30 years ago, and wasinitially treated only with aspirin and phlebotoemis. Ten years ago, when he needed more control of his blood counts, he used hydrea, and several forms of interfereons. He currently is doing well on Pegasus, a form of interfereon that has fewer side effects.
We belong to several on-line- support groups. People come to us all the time with great fears because they have heard this outdated information about severely shortened life span. It is simply no longer the case. I hope this gives hope to those who may have been alarmed.
Robert Sills says
I agree, I have had Polycythemia Vera almost 30 years, am a body builder, have not have a blood letting in almost 2 years. I am 67. I did have a lot of clots and Embolism when I first got it. I have a number of things I have taken that is no allowed in the USA, but my doctor allows it here. Change of diet and where I was living has added to my better health.
Bob Krantz says
I am 71 years old and was diagnosed with PV last month. I’ve had one blood letting and am due for the second one March 9. I guess I need to find out if I have primary or secondary. Thank You for being here.
Jean Angus says
Thank you for your statement about how a lot of information people have been getting is outdated. I have been fortunate to have my dosage of Hydroxyurea decreased to 1 tablet 3 times a week. Each is 500mg. That’s after taking 1 each day. Dr at Mayo told me he has had patients actually go off it for an extended period of time. Then go back on.