Living with Polycythemia Vera

Polycythemia vera (PV) develops very slowly. It may not cause signs or symptoms for years. If you have PV, the sooner it's diagnosed, the sooner your doctor can begin treating you. With proper treatment, you can prevent or delay complications.

Preventing Complications

Moderate physical activities, such as walking, can safely increase your heart rate and improve blood flow to your body. Improving blood flow lowers your risk of blood clots. Leg and ankle stretching exercises also can help improve your blood flow.

PV may cause itching all over your body. It's important not to scratch and damage your skin. If bathing or showering causes you to have severe itching, try using cooler water and gentler soap. Carefully and gently dry your skin after baths, and use moisturizing lotion on your skin. Starch baths also may help ease itchy skin.

PV causes poor blood flow in your hands and feet. As a result, you may be more prone to injuries from cold, heat, and pressure. If you have PV, avoid long-term exposure to extremes in temperature or pressure. For example:

  • Take extra care of your hands and feet in cold weather. Wear warm gloves, socks, and shoes.
  • Avoid extreme heat, and protect yourself from the sun. Drink plenty of liquids. Avoid hot tubs, heated whirlpools, or hot baths of any type. Also, tanning beds, sun lamps, and heat lamps can damage your skin if you have PV.
  • Guard against trauma or situations where you may be at high risk of injury, such as during sports or strenuous activities. If you're injured, seek treatment right away. Tell the person treating you that you have PV.
  • Check your feet regularly and report any sores to your doctor.

Getting Ongoing Care

If you have PV, you'll need lifelong medical care for the disease. Ask your doctor how often you should schedule followup visits.

Routine care will allow your doctor to detect any changes with your PV and treat them early, if needed. You may need periodic blood tests to show whether the disease is getting worse.

Follow your treatment plan and take all of your medicines exactly as your doctor prescribes.


Source: National Heart, Lung, and Blood Institute, National Institutes of Health.