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.

Key Points

Polycythemia vera (PV) is a rare, chronic disease in which your body produces too many red blood cells. These extra blood cells thicken your blood, which can lead to blood clots, stroke, and heart attack .
Polycythemia vera is also known as primary polycythemia. A mutation in the JAK 2 gene causes PV, but the cause of the mutation is not known.
Secondary polycythemia is caused by long-term exposure to low levels of oxygen. It is not related to the JAK 2 gene.
PV is a very rare blood disease. It is more common in adults older than 60 years and in men.
The most common signs and symptoms of PV are pressure or fullness on the left side of the abdomen due to enlargement of the spleen, headache, double vision, itching all over, reddened face, weakness, dizziness, and unexplained weight loss.
PV is diagnosed based on symptoms, physical exam, age, test results, and overall health.
The goals of treating PV are to control your symptoms and reduce the risk of complications caused by thickened blood and blood clots.
Treatment may include phlebotomy (removing blood to reduce the number of red blood cells), medicine, or biological therapy.
PV cannot be prevented, but treatment can prevent or delay symptoms and complications. Some cases of secondary polycythemia may be prevented by not doing things that deprive your body of oxygen for a long time.
If you have PV, you will need regular medical care and monitoring for the rest of your life. It is important to follow the treatments your doctor prescribes.
How Can Polycythemia Vera Be Prevented?

Polycythemia vera (PV) cannot be prevented. But with treatment, symptoms and complications can be prevented or delayed.

Secondary polycythemia may be prevented in some cases by not doing things that deprive your body of normal levels of oxygen for a long time. Some things, like mountain climbing, living at high altitudes, or smoking, can be avoided or stopped.

People with serious lung or heart disease may develop secondary polycythemia. In such cases, your doctor will treat the disease that deprives your body of oxygen as effectively as possible. Living a healthy lifestyle that reduces the chances of developing heart and lung disease will help you prevent secondary polycythemia as well.

http://www.nhlbi.nih.gov/health/dci/Diseases/poly/poly_all.html

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