Symptoms of Polycythemia Vera

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Polycythemia vera is a blood disorder in which your body makes too many red blood cells. The condition may cause subtle symptoms, such as a generalized sense of fatigue, or it might not cause symptoms at all at an early stage.

Over time, serious complications can occur. It can cause dangerous blood clots to form, and it may progress to blood cancer and damage the bone marrow. If you have been diagnosed with the condition, knowing its effects and complications can help you and your doctor assess the effectiveness of your treatment and get additional medical help when you need it.

This article will discuss the common symptoms, rare symptoms, and complications of polycythemia vera, and when to see your doctor.

Early stage polycythemia vera can cause fatigue

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Frequent Symptoms 

Polycythemia vera's symptoms are mild, and it might not cause symptoms at all until complications develop. The condition develops slowly. The average age at diagnosis is 60, although it can affect people younger than 40 years old.

Red blood cells carry oxygen to the cells of the body to provide them with energy. But when there are excess red blood cells in the blood vessels—which occurs with polycythemia vera—blood flow is impaired, oxygen delivery becomes inadequate, and the risk of blood clots increases.

Common symptoms of polycythemia vera include:

  • Dizziness 
  • Generalized fatigue 
  • Headaches
  • Difficulty breathing 
  • Enlarged abdomen or abdominal fullness due to splenomegaly (large spleen) 
  • Itchy skin
  • Painful joint swelling, especially in the large toe 
  • Prolonged bleeding from minor cuts 
  • Bruising
  • Gastrointestinal bleeding, which can cause hematemesis (vomiting blood) or blood in the stool 
  • Weight loss 

Before being diagnosed with polycythemia vera, you may recall having experienced some of these symptoms, or you might only remember them when your doctor brings them up during your medical visit.

Once you have been diagnosed, you should keep track of your symptoms so you can get the proper treatment for your condition. Worsening symptoms can be a sign that polycythemia is progressing.

Rare Symptoms 

Polycythemia vera can cause infrequent symptoms as well, and you can experience any combination of common or rare symptoms intermittently (once in a while) or constantly. 

Less common symptoms include: 

  • Bone pain 
  • Vision changes 
  • Sweating 
  • Skin redness 
  • Stomach ulcers, which can cause stomach pain or indigestion 
  • Kidney stones that may cause severe pain on one side of your lower back

These effects may require medical treatment in addition to your usual treatment for polycythemia vera. 

Complications/Subgroup Indications 

The most common complications of polycythemia vera are bleeding and blood clots, such as the following:

  • Bleeding can be visible, with prolonged bleeding from a cut, or it may be internal, such as in the brain or gastrointestinal tract (stomach and intestines).
  • Blood clots can occur in the brain, heart, kidney, liver, spleen, or stomach.

These problems are considered medical emergencies, can rapidly worsen, and may lead to death. 

The long-term complications of polycythemia vera include:

  • Myelofibrosis: This is a rare type of cancer in which abnormal blood cells are produced and scar tissue forms inside the bone marrow. It can progress slowly. Effects can include anemia (low healthy red blood cells), weakness, low energy, an increased risk of infections, and bleeding. The severity and progression of this condition can vary.
  • Acute myelogenous leukemia (AML): This is a type of cancer that causes increased production of immature white blood cells—the cells that help your body fight infection. AML leads to an increased risk of infection. It sometimes causes visible swelling and organ damage, such as to the kidneys. 

These conditions may cause vague symptoms of fatigue, weight loss, and generalized weakness. If you have been diagnosed with polycythemia vera, your doctor may check for complications with periodic blood tests.

If you have symptoms of these cancers, your doctor might order an imaging test or perform a biopsy (removing a tissue sample for further examination in a lab), depending on your symptoms and physical examination. 

Pregnancy 

Polycythemia vera can increase the risk of certain complications during pregnancy, including miscarriage and postpartum (after-delivery) complications, such as bleeding.

If you have polycythemia vera, it is important to discuss your pregnancy plans with your doctor and to get specialized prenatal care during your pregnancy. Treatment for polycythemia vera can reduce the risk of complications for the person giving birth and the baby.

When to See a Doctor/Go to the Hospital 

Polycythemia vera can cause a variety of complications, and some of them are dangerous.  Blood clots in the veins or arteries and bleeding anywhere in the body can cause a range of symptoms. The symptoms differ depending on which area of the body is affected.

You should call your doctor if you experience any of the following: 

  • Increased fatigue 
  • Weight loss
  • Bleeding that worsens
  • Bone pain 
  • Abdominal discomfort or indigestion 
  • An enlarged abdomen 
  • Itchiness or redness of your skin 

You and your doctor will discuss your symptoms at your regularly scheduled appointments, but you should also call your doctor if you develop changes or new symptoms. 

You should get prompt medical attention if you experience any of the following: 

  • Severe head pain
  • Changes in consciousness 
  • Seizures 
  • Weakness on one side of the body or face
  • Decreased vision 
  • Chest pain 
  • Shortness of breath or trouble breathing 
  • Severe abdominal pain 
  • Severe bleeding 

These problems can indicate a stroke, heart attack, severe bleed, or a serious blood clot in the body.

Time Matters

Timely treatment for blood clots and bleeding can have a major impact on your overall outcome and recovery.

Summary

Polycythemia vera often has vague symptoms or no symptoms early in its course. It usually progresses slowly, and you may notice dizziness, fatigue, headache, and other symptoms. Over time, serious complications can occur, including blood clots and blood cancer.

A Word From Verywell

Polycythemia vera is a lifelong condition. It requires treatment, and the survival with appropriate medical care can exceed 35 years after diagnosis for young people with the disease.

You should learn to recognize signs of worsening disease or complications. Discuss a plan of action with your doctor so you will know when to call with questions and when to seek urgent medical attention. 

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