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With red blood cell count, more is not always better. In a condition called polycythemia vera, a high red blood cell count leads to serious, sometimes deadly disease.

Stanley got an unexpected call a few days after checking with his doctor for his annual physical.

The lab needed for him to come back for another round of blood tests. His blood was too thick to test. His high red blood cell count was too high to measure.

Stanley suspected that his blood may have been too viscous for analysis because he was dehydrated. Stanley and his husband were avid golfers, but last weekend he went back to the clubhouse after the seventh hole. He was just too tired to finish the round. His legs ached so much he drove his golf cart right up to the club's door.

Stanley had also been feeling itchy. He didn't have a rash, but he itched all the time. He thought it might be an allergy. There was blurred vision, too, but Stanley thought maybe his itchy eyes were also due to dust and pollen.

The second round of blood testing came back with a very different diagnosis. Stanley, like about 100,000 other people in North America, had been diagnosed with a condition called polycythemia vera.

What Is Polycythemia Vera?

Polycythemia is a condition in which the bone marrow produces too many blood cells. Polycythemia vera is "true" polycythemia, caused by an abnormality of the stem cells in bone marrow, rather than a reaction to high altitude or poor circulation. An extremely high red blood cell count is a hallmark of the condition.

Polycythemia vera can strike males or females at any age. It's more common among men than women, however, and it's usually diagnosed after the age of 60 [1]. However, some people are diagnosed with the disease in their teens. The overproduction of red blood cells makes "blood like sludge." This leads to a variety of predictable polycythemia vera symptoms:

  • Dizziness.
  • Shortness of breath.
  • Ringing in the ears (tinnitus).
  • Visual disturbances, sometimes with a migraine [2], sometimes with a condition called amaurosis fugax [3], in which sluggish blood flow to the retina results in loss of "spots" of vision like a plastic curtain falling over the field of vision.
  • Itchiness without rashes [4].
  • Chest pain (angina) [5].
  • Leg pain (claudication) [6].

As the disease progresses over time, there are often abdominal pain, fever, weight loss, and attention deficit. There are often skin changes. Excess red blood cells and high hemoglobin levels may make the complexion unusually ruddy (red) [7]. But the diseases can also interfere with circulation so much that people become ghostly pale [8]. People who have polycythemia vera typically have a lower quality of life even than people who develop leukemia or lymphoma.

When the blood is extremely thick, there may even be a heart attack, stroke, or deep vein thrombosis, sometimes fatal [9].

What Can Be Done About Polycythemia Vera?

Almost everyone who is diagnosed with polycythemia vera will be asked to take a baby (81 mg) Aspirin every day. The reason for taking Aspirin in avoiding heart attacks and strokes.

Almost everyone who is diagnosed with this condition will also be asked to come in once or twice a week for phlebotomy, therapeutic drawing of blood. Phlebotomy is the quickest way to deal with higher red blood cell counts and higher hemoglobin levels. Some older patients who have cardiovascular disease, however, cannot have phlebotomy because they tend to pass out at the end of the procedure due to a process called orthostatic hypotension. They may be given an IV of saline to replace the blood that is withdrawn, or they may be treated with drugs alone.

Many people who have polycythemia vera will be put on a medication called hydroxyurea (HU) to slow down the production of red blood cells.

It can be a major challenge to deal with side effects:

  • hair loss,
  • rashes,
  • weight gain,
  • upset stomach,
  • vomiting,
  • constipation,
  • diarrhea,
  • dizziness,
  • drowsiness,
  • headache

are common side effects of the drug. Because HU interferes with a woman's fertility, some women who have polycythemia will opt to take interferon treatments.

However, interferon has even more side effects than HU. It commonly causes flu-like symptoms. It can cause marked fatigue. There can be liver damage. Interferon treatments are also extremely expensive. However, women who want to have babies in the future will often take interferon to preserve fertility. Even so, fertility treatments may prove necessary.

What Can You Do to Maintain Your Quality of Life If You Have Polycythemia?

The most important things you can to do to keep as much quality of life as possible if you have polycythemia are very simple. Take your baby Aspirin. If you have high blood pressure, keep it under close control. If you have high cholesterol, take a statin.

The statin isn't really for your cholesterol. It's for preventing the inflammation that can precede a heart attack or stroke. If you also have diabetes, take your blood sugar levels, and keep your blood sugar levels under control as best you can.

Make sure your primary care doctor knows you need monitoring for higher red blood cell levels, high hemoglobin levels, and higher clotting factor levels requiring immediate treatment.

Many but far from all people who have polycythemia eventually develop blood or bone cancers. If you report for all your checkups, cancer is more likely to be caught at an earlier, more easily treatable stage. There may be a time when polycythemia becomes curable, but for several decades you may find it is survivable, and with careful attention to your daily routine, you may have many days to enjoy your life.

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