Patient education: Polycythemia vera (PV) (The Basics)

What is polycythemia vera? — Polycythemia vera ("PV") is a condition that affects bone marrow. Bone marrow is the tissue in the center of your bones that makes blood cells.

People with PV make too many red blood cells. (These are the cells that carry oxygen to the body.) They might also have higher than normal levels of:

●White blood cells – These cells fight infections.

●Platelets – Platelets help blood to clot, so that you stop bleeding after you are cut or injured.

What are the symptoms of PV? — People with PV might:

●Have headaches

●Feel weak or dizzy

●Sweat a lot

●Feel very itchy, especially when rubbing their skin after a warm bath or shower

●Have painful, swollen joints, especially in the big toe, ankle, or knee (called "gout")

●Have burning pain in their hands and feet, which can also turn red, white, or blue

●Have dangerous blood clots

●Have vision problems, such as seeing dark spots, sparks, or flashes

●Have stomach problems, such as pain in the upper belly

Are there tests for PV? — Yes. Your doctor or nurse will do an exam and order different blood tests.

You might also need a bone marrow biopsy. For this test, a doctor takes a very small sample of your bone marrow. Then, another doctor looks at the cells under a microscope.

How is PV treated? — Treatments include:

●Removing blood from your body – This is called "phlebotomy." It is similar to what happens if you give blood.

●Low-dose aspirin – This helps prevent blood clots.

●Medicines to keep your bone marrow from making too many red blood cells – These include hydroxyurea (brand names: Droxia, Hydrea), interferon alfa (brand name: Intron A), ruxolitinib (brand name: Jakafi), busulfan (brand name: Myleran, Busulfex), and others.

Your doctor might also prescribe medicines or other treatments to help with itching.

What else should I do? — The risk for blood clots and heart attacks is higher in people with PV who smoke or have high blood pressure. Follow your doctor's instructions for how to control these risks. You should also mention any symptoms or problems you have during treatment.

Getting treated for PV involves making many choices, such as what treatment to have and when.

Always let your doctors and nurses know how you feel about a treatment. Any time you are offered a treatment, ask:

●What are the benefits of this treatment? Is it likely to help me live longer? Will it reduce or prevent symptoms?

●What are the downsides to this treatment?

●Are there other options besides this treatment?

●What happens if I do not have this treatment?

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