Polycythemia vera (PV) is a rare blood disease in which your body produces too many red blood cells (and sometimes too many white blood cells and platelets, too). Many of these abnormal cells function poorly. The high levels of blood cells make your blood thicker than normal, so blood clots can form more easily. Blood clots, or the grouping together of blood cells, clog up your arteries and veins, and can cause a heart attack or stroke. On top of that, when blood is thicker, it doesn’t move quickly enough to spread necessary oxygen throughout your body. This means your organs don’t get all the oxygen they need, which can cause serious problems, like angina (chest pain) and heart failure.
PV is a disease that needs to be treated as soon as possible, but with the right treatment, most people with PV reach their normal life expectancy. Fortunately, there are effective treatments available that can manage the condition and keep patients from experiencing complications. However, PV doesn’t always show symptoms, so many people don’t even know they have it. Signs of PV develop slowly over many years and the disease is often discovered during routine blood tests done for other reasons.
That’s not to say that no one experiences symptoms of PV; many patients do have symptoms, including:
Without enough oxygen, your brain isn’t able to function properly, which can lead to these more benign symptoms. Often, patients will ignore these signs because they can be attributed to a variety of other problems.
When your heart can’t pump the amount of blood needed to reach your entire body, it diverts blood flow away from less important areas, like your arms and legs, so that there’s enough to supply crucial systems like your heart and brain. This means that you may feel weakness in your limbs, which can make ordinary activities like walking or writing seem tiring.
This symptom occurs most commonly at night. Doctors don’t fully understand why sweating occurs, but it may be a result of your body fighting the disease.
A high red blood cell count, like that found in PV patients, may cause a ringing in the ears, but experts aren’t completely sure why it occurs.
Patients with PV may feel these symptoms as a result of an enlarged spleen. The spleen helps to filter worn out blood cells, and since PV causes too many blood cells, your spleen has to work harder than normal. As a result, the spleen grows in size, which is why you may feel pressure or fullness in your abdomen. Your enlarged spleen may press upon other organs and can use up a lot of energy, causing muscle wasting and weight loss.
PV can affect your skin in different ways; you may feel extremely itchy, especially after warm bath or shower, and some PV patients exhibit ruddy complexions and red-colored extremities. You may also develop a condition called erythromelalgia, in which the hands and feet are purplish, the skin is warm to the touch, and you might experience a painful burning sensation or swelling of affected areas.
High levels of red blood cells can cause problems in your gut, like peptic ulcers. Peptic ulcers are open sores on the lining of your gastrointestinal tract, which can lead to stomach bleeding.
About 1 in 10 people with PV develop gout, which is characterized by inflammation of your joints. The high levels of red blood cells can increase levels of uric acid in your body, which crystallizes and leads to symptoms of gout.
People with PV may bruise easily and have frequent nosebleeds and bleeding from the gums. They can also experience complications due to blood clots, like stroke, heart attack, or deep vein thrombosis (DVT), which is a blood clot that occurs in the veins of the legs.
If you’re experiencing any of these symptoms, it’s important to see your doctor to investigate further. Although there’s no cure yet for PV, you can live a normal life with the disease if you get the right treatment—and the earlier you treat, the better your outcome.
