What Is PV?

Polycythemia vera (polly-sigh-THEE-me-ah-VAIR-Ah), or PV, is a rare, chronic blood cancer where the bone marrow produces too many red blood cells. You may also have too many white blood cells and platelets (blood clotting cells) in your blood, but having too many red blood cells causes most of the problems associated with this condition. PV is part of a group of diseases called myeloproliferative neoplasms, or MPNs.

Too many red blood cells can cause the blood to thicken. Thicker blood doesn’t flow normally through arteries and veins. Increased blood thickness and decreased blood flow, as well as abnormalities in your platelets and white blood cells, may increase your risk of blood clots. Blood clots can cause a stroke, heart attack, or blockage of an artery in your lungs or in a vein deep within a muscle in your arms or legs.

Image of Matt W, Community Voice Champion

What the EKG had, in fact, detected, was my heart struggling to push my abnormally thick blood through my body. –Matt W, Community Voice Champion

Can PV Transform Into Other Blood Diseases?

PV usually develops slowly. But as the symptoms get worse, they can take a toll on you and affect your daily life. In a very small number of people, PV leads to other blood diseases, such as myelofibrosis (MF) (a disease in which scar tissue develops in the bone marrow) or leukemia.

Learn more about what PV is or about the signs and symptoms.

Watch physician assistant Amber Essenmacher explain the association between blood counts and the risk of complications for people living with PV.

How Common Is PV?

Approximately 100,000 people in the United States are living with this rare disease. PV can occur at any age, but it is more common in people over 60 years of age. It affects slightly more men than women.

Learn more about how PV is diagnosed.

Graphic of the shape of the United States with text on the graphic that says - ONLY ABOUT 100,000 PEOPLE IN THE U.S. CURRENTLY HAVE PV and 60+ MORE COMMON IN PEOPLE OVER 60 Graphic of the shape of the United States with text on the graphic that says - ONLY ABOUT 100,000 PEOPLE IN THE U.S. CURRENTLY HAVE PV and 60+ MORE COMMON IN PEOPLE OVER 60

How Is It Managed?

Management may include low-dose aspirin. Phlebotomy, a procedure that helps lower blood cell counts by removing blood from the body, may also be used. Patients who have difficulty with phlebotomy, who have an enlarged spleen, who experience severe PV-related symptoms, or who continue to have elevated blood counts may have other care management approaches, including but not limited to chemotherapy drugs.

View polycythemia vera educational materials.

What Is the Prognosis for People With PV?

There is no single, one-size-fits-all answer regarding the life expectancy associated with PV. Each individual journey is unique, and how PV may change over time will vary from person to person.

PV can often be effectively managed for a long period of time with ongoing medical supervision and an individualized management plan. The median survival for people with PV can be up to 20 years or longer, depending on the individual and his or her specific management approach. However, PV can worsen (progress), and in some cases, transform into myelofibrosis.

Your specific medical situation should be evaluated by your Healthcare Professional, who is the best source of information about life expectancy with PV.

Understand Your PV State of Mine

As you work with your Healthcare Professional to understand and assess your PV, it’s important to be aware of how you feel and how this disease affects your daily life. Your symptoms, your blood counts, even your feelings can help you identify your PV State of Mine—or where you are on your journey with PV.

Evaluating your polycythemia vera and understanding your PV State of Mine may help you recognize when something isn’t right. This can empower you to talk to your Healthcare Professional about how it is affecting you and how it’s changing over time so that you can work together in managing your condition.

View polycythemia vera resources to help you get the conversation started with your Healthcare Professional.

VIEW TRANSCRIPT

My name is Dave. I live in South Carolina with my wife, Betsy, and I was diagnosed with polycythemia vera, or PV, in 2011.

I was always a health and fitness enthusiast, you know, for most of my life.

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This is Dave’s PV STATE OF MINE…

… or where he is on his journey with PV.

I was actually, you know, in that state of mind when I went to the doctor and got diagnosed.

I had gone for an annual checkup with my primary physician. I went in, and he was reviewing all my numbers, and the hematocrit raised a red flag. It was at a number of 68.

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Hematocrit is a measure of the volume of red blood cells in the blood and is stated as a percentage.

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Talk to your Healthcare Professional about your blood test results to identify your appropriate blood count targets and goals.

I went to the hematologist, and…I remember this vividly the concern on his face- he goes, "This is serious."

I was in denial at that point, like, "This can't happen to me. I’m in too good of shape for this to happen to me. My lifestyle’s too good for me to get this."

I decided that instead of going into a hole that I would go ahead and reexamine what I’m doing. So I really doubled down on the nutrition and kind of changed my whole attitude towards fitness.

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Please talk with your Healthcare Professional before changing your diet or beginning any exercise program.

I found that I really wasn’t very agile, so I changed my whole idea in my head about how I want to proceed with my workouts. So the advances I made by changing my workout routines, and then doubling down on my nutrition also, has helped me tremendously.

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Dave found what works for him. PV affects each person differently. Talk with your Healthcare Professional about your disease.

My nutrition is a big part of my life…but once I was diagnosed I felt I needed to step up my game, so I started researching different ways of eating. What made sense to me…it’s going to be something that’s high nutrition. I'll make a protein shake, but I’ll put berries and greens and things in it to make it more nutritious.

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Some people with PV may not have symptoms.

I tell people, I wake up and I feel like I'm 25 years old.

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Others may have severe symptoms that interfere with their daily lives.

I have the energy; I have the vibrancy of 25-year-old. By the time I go to bed at night, I’m a 90-year-old man.

Once you start feeling that fatigue and it’s like every day at that time, you know it's got to be related to the PV.

So that's why all my workouts, any projects I want to do, anything I have scheduled for the day, I try to fit it in in the morning.

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BETSY
DAVE'S WIFE

[Betsy] He handles it very well. He never complains, and his eating, his exercising – he just takes very good care of himself. Days he doesn't feel good, you know—that's OK.

[DAVE] I don’t feel sick. I look at it, "Okay this is another thing in my life that’s a challenge for me, and I’m going to overcome this challenge." I know it’ll never go away, but you know, I’m going to make the best of it. That's where I want to be.

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PV affects each person differently. Talk with your Healthcare Professional about your disease.

[DAVE] Currently, I’m working with my doctor to manage [my] PV So every three weeks I’ve been getting a phlebotomy to keep my hematocrit down under 45.

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Dave uses the PV Tracker Tool to stay aware of his PV STATE OF MINE.

The PV Tracker Tool is a great way for me to track my numbers. And it helps my condition.

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Help keep your PV on track with the PV Tracker Tool at PVSymptomTracker.com

[DAVE] …if I see any fluctuations or anything that concerns me, I can access it and then bring it to the doctor's attention and you know, and discuss it with him.

[BETSY] We make the best of every day. We have fun. We laugh all the time. We have great family. We have great friends, and we keep busy as much as possible under the circumstances. As long as he has his gym and he can get out there, once a day, he's a happy camper.

[DAVE] I tell myself it's not how long you live; it's how you live. So I try to live my life to the fullest every day.

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Understand your PV State of Mine.
Talk to your Healthcare Professional about where you are on your journey with PV.

Get resources to help you talk to your Healthcare Professional about PV and also join the Voices of MPN community. Visit Voices of MPN on Facebook, Twitter, Pinterest, and YouTube.

This video is sponsored by Incyte Corporation.

Voices of MPN and the Voices of MPN logo are registered trademarks of Incyte.

© 2018, Incyte Corporation. All rights reserved. MAT-HEM-00012 07/18

Watch Dave’s story to learn more about his journey with PV.

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