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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.

What the EKG had, in fact, detected, was my heart struggling to push my abnormally thick blood through my body. —Matt W, PV Community Member

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 and Medical Science Liaison (MSL) at Incyte 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.

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.

Speak Up—and Spell Out How Your PV Makes You Feel

When you’re living with PV, you may find yourself saying that you’re fine—even when you might not be. But when you don’t speak up and share how you really feel, you may miss out on the opportunity to get the care and support that you need and deserve.

Remember, changes in your PV symptoms could be a sign that your PV is changing, too. So be sure to spell out how you really feel. Because fine is not enough.

View PV resources to help you take an active role in your care.

 

VIEW TRANSCRIPT

(Christine) I work in healthcare, and I have patients that come in and have a hard time opening up…. And then, on the flip side…I have the same problem….

(onscreen text) THERE ARE 2 SIDES TO CHRISTINE’S MYELOPROLIFERATIVE NEOPLASM (MPN) STORY…

(onscreen text)

FELT UNCOMFORTABLE SHARING MY SYMPTOMS

I DIDN’T KNOW WHAT QUESTIONS TO ASK

NEEDED TO FIND THE RIGHT HEALTHCARE PROFESSIONAL

EVERYTHING CHANGED WITH A SECOND OPINION

(onscreen text) CHRISTINE Diagnosed With Polycythemia Vera (PV) in 2015

(Christine) It's hard for a lot of people to open up to their physician at times...I find it hard. It's easy to say that you're just fine versus having a list of complaints….

When I was first diagnosed with PV, I really didn't know much about MPNs…so I was really reluctant to ask questions. I’d listen to what they had to say to me.

When I talk about…my symptoms, I feel like I'm whining…or I’m a burden to people.

When someone asks you how you're doing, you just say, "I'm fine. I'm good." …Sometimes it's easier just not to tell anybody what's going on….

(onscreen text) IT’S IMPORTANT TO SPEAK UP AND SPELL OUT THE IMPACT OF YOUR MPN SYMPTOMS

(Christine) I was having a lot of headaches. I was very fatigued. And I was starting to have pain in my feet, pain in my hands, and I really didn't tell my hematologist right away. I didn’t feel like I could share…and I just…I just held back.

…I didn't know these symptoms I was having…were from my MPN.

It's important to feel comfortable with your physician, and so you can open up and tell them, you know, the symptoms that you're feeling.

…We need to let our physicians know that we're not just fine…

(onscreen text) DETAILED SYMPTOM COMMUNICATION MAY HELP IDENTIFY EARLY SIGNS OF DISEASE PROGRESSION

(Christine) It is so risky when you do not open up to your physician. There might be subtle changes that you’re feeling, um, they’re not seeing in the blood work…but it could be an indication that things are changing with your disease…. I think it’s important to give all your symptoms.

…Instead of saying “just fine,” sometimes I find it’s easier to write things down…knowing there’s times where…maybe you just don’t feel like opening up…. It’s easy to pass a paper with some questions on it….

No question's a silly question. You need to ask whatever you want to ask. It's important.

(onscreen text) UNDERSTANDING HOW YOUR MPN IS AFFECTING YOU CAN LEAD TO MORE INFORMED CONVERSATIONS ABOUT YOUR CARE

(Christine) It's so important to try to gain more knowledge of your disease…. It'll help you feel more confident….

I now know what to look for with symptoms, what to ask my physicians.

(onscreen text) SEEKING OUT THE SPECIFIC SUPPORT YOU NEED CAN HELP EMPOWER THE JOURNEY AHEAD

(Christine) …After being diagnosed, I…had a second opinion. It was with a true MPN specialist.

They're the people that see these diseases every day…they're up on all the research….

I’m more of a partner with the hematologists I have today.

…And I can open up, and that is so important. It is empowering….

(onscreen text) BECAUSE FINE IS NOT ENOUGH FOR YOUR MPN JOURNEY

(Christine) You need to tell any physician that you see…how you're feeling. Don’t be “just fine.”

Let ‘em know what's going on in your life. Open up.

(onscreen text) Download communication tools to help empower your MPN healthcare conversations at FineIsNotEnough.com

(onscreen text) This video is sponsored by Incyte Corporation.

(onscreen text) © 2022, Incyte Corporation. MAT-HEM-02774  04/22

“I work in healthcare, and I have patients that come in and have a hard time opening up.”
—Christine, diagnosed with PV

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