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What Are the Signs & Symptoms of PV?

Polycythemia vera (PV) is a chronic blood cancer. This means it lasts a long time and may never go away. Some people with PV may not have symptoms. Others have severe symptoms that interfere with their daily lives. PV is a progressive disease, it may change or get worse with time. Changes in your symptoms may be a possible sign of disease progression. That’s why it’s important to have open, honest communication with your Healthcare Professional.

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Speak up and spell it out! It is important to talk to your Healthcare Professional about how your PV symptoms affect your daily routines, activity levels and overall quality of life. This information offers valuable insights about the current status of your disease—and may also help inform your ongoing care management approach.

 

Watch as physician assistant and medical science liaison (MSL) at Incyte Amber Essenmacher reviews important topics that can help you talk with your Healthcare Professional about your myeloproliferative neoplasm (MPN).

What Are Common PV Symptoms?

Fatigue

Are there activities that you were able to do 3 months ago that you struggle with now?

Inactivity

How much does your inactivity influence your day-to-day activities?

Day or Night Sweats

Do you experience sweating, particularly at night or in the evenings? How often did this happen in the past month?

Itching

When you shower, do you ever feel itchy afterwards? How often?

Bone Pain

Have you felt any deep achiness throughout your body that causes you to limit your activities?

Unintentional Weight Loss

Are you losing weight, and if so, how much weight have you lost over the last 6 months?

Fever

How often have you had a fever of >100 degrees Fahrenheit?

Cause of These Symptoms:

Inflammation caused by high levels of certain proteins (cytokines) in the blood

Brain Fog

How often have you felt memory lapses, inability to pay attention for long periods, or having problems concentrating?

Cause of Symptom:

Having too many red blood cells (hyperviscosity)

Abdominal Pain or Discomfort

Do you have abdominal discomfort, particularly after eating?

An Early Feeling of Fullness

Do you feel full quickly after meals?

Cause of These Symptoms:

Enlarged spleen (splenomegaly)

Additional symptoms you may experience include:

  • Muscle aches
  • Insomnia
  • Headache
  • Dizziness, vertigo, light-headedness
  • Reddening of the face or a burning feeling on the skin
  • Painful burning of the hands or feet
  • Blurred vision or blind spots
  • Ringing in the ears
  • Chest pain
  • Shortness of breath
  • Bleeding from the gums and heavy bleeding from small cuts
  • Pain or discomfort under the left ribs
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According to the MPN Landmark Survey,* 66% of patients with PV reported that their symptoms reduced their quality of life.

*The MPN Landmark Survey was a web-based questionnaire, sponsored by Incyte, intended to help evaluate the patient disease burden in the MPN setting. A total of 813 patients in the US diagnosed with MF, PV, or ET completed the survey (207 with MF; 380 with PV; and 226 with ET).

Why Is It Important to Track PV Symptoms?

Because PV is a progressive condition, it can change over time. That means that some of the signs and symptoms may change as well. This is why it’s important to take an active role in monitoring your PV over time. You can do this by tracking your condition on a regular basis and by speaking up and spelling out the impact of your PV symptoms at every visit with your Healthcare Professional.

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Careful symptom tracking provides a number of valuable insights. Not only does it help identify trends within your health, but it can also help you and your Healthcare Professional better understand how to manage and adjust your care over time.

It is important to keep track of any symptoms you have, even if you are not sure they are related to your condition. Don’t assume that any symptom is too minor or not worth recording. Tracking and talking to your Healthcare Professional about your symptoms helps you both:

  • Understand how PV is affecting you
  • Follow how your PV is changing over time
  • Discuss options for managing your PV and its symptoms

Remember, these insights will help your Healthcare Professional understand what's happening with your condition over time—and that can help ensure that your care management approach is the right one for you.

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Use the PV Tracker Tool Track symptoms, blood counts, and phlebotomies related to PV

What Are Complications From an Enlarged Spleen?

Your spleen helps your body fight infection and filter unwanted material, such as old or damaged blood cells. For a number of reasons, polycythemia vera can cause your spleen to grow and become bigger. An enlargement of the spleen is known as splenomegaly (splee-nuh-MEG-uh-lee). Symptoms of an enlarged spleen can include:

  • Pain or discomfort in your abdomen or under your left ribs
  • Feeling full when you haven’t eaten or have eaten very little
Icon of a spleen with text that says – BETWEEN 30% & 40% OF PATIENTS WITH PV PRESENT WITH AN ENLARGED SPLEENIcon of a spleen with text that says – BETWEEN 30% & 40% OF PATIENTS WITH PV PRESENT WITH AN ENLARGED SPLEEN

What Should I Know About Blood Counts and PV?

Hematocrit is a measure of the volume of red blood cells in the blood and is stated as a percentage. Signs that your PV is not being controlled can include a hematocrit level above 45%. Medical research suggests that an elevated hematocrit level can increase the risk of serious health problems, such as blood clots leading to heart attack or stroke.

Your Healthcare Professional may have a different hematocrit target for you based on your individual case, and may periodically order blood tests to monitor your condition. In addition to hematocrit, your Healthcare Professional may look at your red blood cell count, white blood cell count, and platelet count.

Keeping your blood counts—particularly your hematocrit—at the right levels is an important goal in managing your condition. Study findings have shown that for some patients, stabilizing blood counts can help lessen the chance of serious complications.

 

View a video with physician assistant and medical science liaison (MSL) at Incyte Amber Essenmacher to better understand the relationship between blood counts and increased risk of health problems for people living with PV.

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Questions About PV Disease Progression?

Read the blog article: When Polycythemia Vera Becomes Myelofibrosis

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