Living With Polycythemia Vera

Preventing Complications

You may have polycythemia vera (PV) long before you see signs or symptoms of the disease. If you have PV, the sooner it is diagnosed, the sooner your doctor can begin treating you.

Activities such as walking can help improve your blood circulation if you have PV. Moderate exercise that safely increases your heart rate improves the flow of blood to the parts of your body. Improving blood flow reduces the chances that you might develop blood clots. Leg and ankle stretching exercises also can help improve your blood circulation.

If you have PV, you may experience itchiness all over as a symptom of the disease. It is important not to damage your skin from scratching. If bathing or showering causes you to have severe itching, try using cooler water and gentler soap. Dry your skin carefully and gently after baths and use moisturizing lotion on the skin.

Due to poor blood flow in the hands and feet that results from PV, you may be more prone to injury from exposure to cold, heat, and pressure. If you have PV, it is important for you to avoid prolonged exposure to extremes in temperature or pressure.

• In cold weather, you should wear warm clothing. Take particular care with your hands and feet. Warm gloves, socks, and shoes are very important protection for you.
• Avoid extreme heat. Protect yourself from the sun. Drink plenty of liquids. Avoid hot tubs, heated whirlpools, or highly heated baths of any type. Be very careful of tanning booths, sun lamps, or heat lamps.
• In playing sports or carrying out daily activities, guard against trauma or situations where your body is put under pressure. If you are injured, seek treatment as quickly as possible. Tell the person treating you that you have PV.
• Check your feet regularly and report any sores to the doctor.

Ongoing Health Care Needs

If you have PV, you will require regular medical care and monitoring of your condition for the rest of your life. It is important to see your doctor for any prescribed treatments for your PV. Your doctor will want to monitor your condition closely. This is important so that your doctor can detect any changes in your condition and treat them early, if necessary. Your doctor may need to perform periodic blood tests to determine the course of the disease. If your doctor prescribes medicine, you will need to take it as prescribed.

Support Groups

The Myeloproliferative Disorders Foundation is a foundation that provides support for and information on PV.