What is polycythemia vera?
Polycythemia vera is a rare blood disorder in which there is an increase in all blood cells, particularly red blood cells. The increase in blood cells makes the blood thicker. This can lead to strokes or tissue and organ damage.
What causes polycythemia vera?
Polycythemia vera is the result of a genetic mutation that develops during your lifetime. It is not an inherited genetic disorder. Why this happens to a given individual is unknown in most cases.
What are the symptoms of polycythemia vera?
When there is an increased blood volume and thickness, complications can occur. The following are the most common symptoms of polycythemia vera. However, each person may experience symptoms differently. Symptoms may include:
- Fatigue and/or weakness
- Shortness of breath and difficulty breathing while lying down
- Visual disturbance, such as double vision, blurred vision, and blind spots
- Inability to concentrate
- Night sweats
- Flushed complexion
- Bleeding gums
- Excessive menstrual bleeding
- Coughing up blood
- Itchy skin (particularly after a hot bath)
- High blood pressure
The symptoms of polycythemia vera may look like other blood disorders or medical problems. Always consult your health care provider for a diagnosis.
How is polycythemia vera diagnosed?
In addition to a complete medical history and physical exam, your doctor may do blood tests to observe the increased number of red blood cells in the body, and distinguish polycythemia vera from other conditions that could cause the red blood cell count to increase.
How is polycythemia vera treated?
Specific treatment for polycythemia vera will be determined by your health care provider based on:
- Your age, overall health, and medical history
- Extent of the disease
- Your tolerance for specific medications, procedures, or therapies
- Expectations for the course of the disease
- Your opinion or preference
Treatment may include:
- Phlebotomy. A procedure that involves removing blood from the body. At first, this must be done frequently, often every week. Once enough blood has been removed to deplete the body's iron stores, necessary to make blood quickly, it does not need to be done as often.
- Certain medications, including chemotherapy. Phlebotomy may not remove platelets effectively so medications are the treatment of choice if the platelets are dangerously high. The medicines help to keep your bone marrow from making too many blood cells, and keep your blood flow and blood thickness closer to normal.
- Radiation therapy. Radiation can help suppress overactive bone marrow cells. This therapy helps lower your red blood cell count and keeps your blood flow and blood thickness closer to normal.
What are the complications of polycythemia vera?
Polycythemia vera can be fatal if not diagnosed and treated. It can cause blood clots resulting in a heart attack, stroke, or pulmonary embolism. Liver and spleen enlargement are other potential complications.
Living with polycythemia vera
There is no cure for polycythemia vera, but its complications can be minimized or delayed with proper treatment. It is important that you work with your health care provider to design a treatment plan that fits your needs. You should also be physically active in order to increase your heart rate and improve your blood flow. Other ways to improve blood flow include stretching of your legs and ankles, wearing warm gloves and socks during cold weather, avoiding extreme heat, and drinking plenty of water. It is also important to avoid situation in which you may be injured and to check your feet for any sores.
Key points about polycythemia vera
- Polycythemia vera is a rare blood disorder in which there is an increase in all blood cells, particularly red blood cells.
- The increase in blood cells makes the blood thicker.
- Thick blood can lead to strokes or tissue and organ damage.
- Symptoms include fatigue and/or weakness, headaches, dizziness, shortness of breath, visual disturbances, nose bleeds, bleeding gums, heavy menstrual periods, and bruising.
- Treatment includes phlebotomy, a procedure in which extra blood is removed from your body, medications, and radiation therapy.
Tips to help you get the most from a visit to your health care provider:
- Before your visit, write down questions you want answered.
- Bring someone with you to help you ask questions and remember what your provider tells you.
- At the visit, write down the names of new medicines, treatments, or tests, and any new instructions your provider gives you.
- If you have a follow-up appointment, write down the date, time, and purpose for that visit.
- Know how you can contact your provider if you have questions.