Polycythemia Vera: Tips to Manage Symptoms

When you have polycythemia vera, your body makes too many red blood cells. You might have extra white blood cells and platelets, too. The condition is also known as polycythemia rubra vera, primary polycythemia, and Osler-Vaquez disease.

Although doctors can’t cure this rare and chronic illness, there are medicines and procedures that will address the issues with your blood. You also have options to manage your symptoms.

Blood Clots

Blood clots (thrombosis) are one of the most dangerous complications of PV. You might get a clot in your brain, your eyes, or your heart. Clots also can block blood flow in your lungs (pulmonary embolism) and form in the large veins in your muscles (deep vein thrombosis, or DVT).

A low dose of aspirin can protect you from clots. Your doctor will tell you whether that’s a good option and the right amount you need. Special exercises for your legs and ankles can help prevent deep vein thrombosis.

Your doctor may also prescribe a drug called anagrelide (Agrylin) to help prevent clots.

Itching

This symptom is also called pruritis. Things you can do at home include:

  • Lower the temperature of your shower or bath, especially in winter.
  • Pat yourself dry to avoid irritating skin.
  • Use lotion to moisturize.
  • Don’t scratch. It can damage your skin and increase your infection risk.

To help control your itching, your doctor might also recommend:

Fatigue

Feeling tired is one of the more common symptoms of PV. You can tackle this with an exercise program. Begin gradually. As you build up, your strength and energy level should improve. Your blood will circulate better, too, and that can prevent clots.

Gout

Uric acid may build up in your body, which can cause your big toe or other joins to swell painfully. Your doctor can prescribe medication -- one is allopurinol (Zyloprim) -- to prevent flare-ups.

Headaches, Vision Problems

Aspirin may help with these issues. You need to talk to your doctor about how much to take. Treatments for polycythemia such as phlebotomy, when blood is taken out of your veins, or certain medications can be helpful.

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Burning Sensations

You might feel as though your hands and feet are burning. Some people with PV have redness or swelling, too. Again, aspirin can help with these symptoms. Phlebotomy and treatment with certain medications can also help.

Weight Loss, Sweats

Interferon injections, sometimes prescribed to fight itching, may also combat weight loss and drenching sweats.

Another medication that can help with these symptoms is a mild type of chemotherapy in pill form. It’s called hydroxycarbamide or hydroxyurea (Droxia, Hydrea).

Make Lifestyle Changes

Boosting your overall health habits is always a good idea, and it may help you manage your PV symptoms. Here are some things you can do:

Work on getting to and staying at a healthy weight. Team up with your doctor on this, from setting a weight goal to making a plan to get there.

Stay hydrated. When you drink enough fluids, it helps to keep your blood from becoming too thick.

Don’t use tobacco in any form. It can make your blood vessels narrow. You’re already at risk of blood clots because of PV, and tobacco raises your odds of having a heart attack or stroke.

Keep an eye on your hands and feet. They are prime spots for sores to develop, and your poor circulation may slow healing. If you notice that, tell your doctor.

Avoid temperature extremes. Bundle up in cold weather, and make sure you protect your hands and feet so they get good circulation. Drink plenty of liquids, and seek the shade in warm weather.

Protect your skin. Use a broad-spectrum sunscreen that has an SPF of 30 or higher. Also, cover up and wear a hat and UV-blocking sunglasses.

Avoid foods high in sodium. They can make you retain fluids and worsen your symptoms.

Keep your airways healthy. Deep breaths and occasional coughs will help maintain your respiratory system.

Follow your PV treatment plan. Keep in touch with your doctor, follow their advice, and report any changes in your symptoms.

WebMD Medical Reference Reviewed by Laura J. Martin, MD on June 18, 2019

Sources

SOURCES:

Genetic and Rare Diseases Information Center: "Polycythemia Vera."

National Organization for Rare Disorders: "Polycythemia Vera."

National Heart, Lung and Blood Institute: "Polycythemia Vera."

Bloodwise.org: "Polycythemia Vera."

Mayo Clinic: "Polycythemia Vera."

University of Iowa Health Care: "Polycythemia Vera."

National Library of Medicine.

CancerCare.org: "Managing Symptoms of Polycythemia Vera."

Leukemia and Lymphoma Society: "Polycythemia Vera Fact Sheet."

Johns Hopkins Medicine: “Polycythemia Vera.”

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