Using the
Polycythemia Vera (PV)
Symptom Assessment Form

Hi. I’m John Mascarenhas, a Professor of Medicine and the Director of the Center of Excellence for Blood Cancers and Myeloid Disorders.

You may have been diagnosed with polycythemia vera, or PV. Then it's important to know that the majority of patients living with PV have symptoms, but these symptoms sometimes go unrecognized because they are often associated with getting older or may even slowly become worse over time. This can cause confusion and lead you to think that these symptoms are your new normal, but they are not. And these symptoms may be due to your PV.

Also, consider that new or worsening symptoms could be a sign that the disease is progressing, even if your blood counts are well controlled. This is why it’s important to understand your symptoms and make sure you are communicating them with your healthcare professional. When these symptoms are caught early on, they may be easier to manage.

One of the things that I do to make sure we don’t miss these symptoms is to ask my patients with PV to track their symptoms between visits. It’s important that I understand the symptoms they’re feeling so that I can ensure we have the treatment plan that’s right for them.

The PV Symptom Assessment Form will help you communicate your symptoms to your healthcare professional and give them a better idea of which PV symptoms you’re experiencing so they can make an effective treatment plan for you. Make sure you print the form to bring it to your next appointment.

You can download the form from voicesofmpn.com. You can also use the QR code on the screen that will take you directly to the PV Symptom Assessment Form.

Print it out, grab a pen, and let’s get started.

There are three important words you need to know to understand how your PV is affecting you:

Symptom: Which symptom are you experiencing?
Severity: How severe is the symptom?
Impact on quality of life: How is it affecting your daily life?

When we go over the PV symptoms mentioned in this video, first ask yourself, “Do I have any of these symptoms?” Then, “What is the frequency and severity of my symptoms?” And finally, “Are there activities I once enjoyed but am no longer able to do because of my symptoms?”

You need to be detailed and thorough in explaining them. This will give your healthcare professional a more complete picture of how PV is affecting you.

You will see that the form asks you to rate your PV symptoms. How bad are they? For example, if you are fatigued, how fatigued are you? Is it a mild fatigue? Is it a moderate level fatigue? Or is it “I don’t have the strength to do what I normally do?”

How many times a week do you experience it? What does this fatigue make you miss out on in your daily life? Remember, now’s not the time to hold back. Be as honest as possible with your answers. They will be valuable when talking with your healthcare professional at your next visit.

Let’s start with fatigue. Fatigue is the most common symptom of PV. In a study of patients with PV, the most frequently reported symptom was fatigue with 73%.

If you are feeling fatigue, this may be your PV, and you need to tell your healthcare professional that you have fatigue, how severe it is, and how much it’s affecting your life.

Write down your answers to the following questions to help understand your fatigue and the severity of it. Take your answers with you on your next office visit to talk about them with your healthcare professional.

First, how much does your fatigue or inactivity influence your day-to-day activities? Your work around the house? Your time spent with friends or loved ones? The things you do for fun? Your employment or life?

Do you get short of breath?

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

Next, let’s talk about night sweats, which is a very common symptom of PV. In one study, 45% of patients reported night sweats as a PV-related symptom. They happen due to overproduction of something called cytokines.

If you are having night sweats, this may be your PV. Write down your answers to the following questions so you can communicate the severity of your night sweats and how much they are affecting your quality of life.

Do you experience sweating, particularly at night or in the evenings?
Does this require you to change your sheets or clothing?
Does this wake you up or affect your sleep?
How often has this happened in the past month?

Itching is another common symptom of PV. In a study, 55% of patients with PV reported itching and considered it severe. If you do have itching, the answers to the following questions may help you communicate the severity of the itching to your healthcare professional.

Have you noticed changes in your skin, particularly itching?
When you shower, do you ever feel itchy afterward? How often?
Have you found yourself taking shorter, fewer, or cooler showers to try to avoid itchiness?
What are the other instances when you tend to feel itchy?

Bone pain is another symptom that has been reported in patients with PV. In one study, 23% of patients reported experiencing bone pain. PV-related bone pain is different from the joint pain in your arms and legs that you would feel with arthritis. It’s a deep ache throughout your body. If you have this type of bone pain, these questions may help you share how it’s affecting you to your healthcare professional.

Have you felt any deep achiness throughout your body?
Does bone pain ever cause you to change or limit your activities?

Another common condition related to PV is hyperviscosity. Put simply, your blood is flowing slower in the smaller blood vessels due to the overproduction of red blood cells. Elevated blood counts may be putting you at risk for thrombosis.

Thrombosis is when blood clots form in your blood vessels, which can lead to further complications. So, if you are experiencing one of the following symptoms, which may be due to hyperviscosity, such as headaches or visual changes, it’s important that you communicate them to your healthcare professional as soon as possible.

Concentration problems were reported in as many as 36% of patients with PV. Like other PV symptoms, this symptom can be confused for something that happens as you get older—or some other problem entirely. That’s why it’s important to identify when this is happening, and using the following questions to keep track of how often you experience it and how long it lasts.

How often have you felt brain fog, such as memory lapses or problems remembering words or dates, the inability to pay attention for long periods, or problems concentrating that interfere with your ability to work or perform other relevant activities?
How has this affected your life? Have you had to change school plans, work, or how you function at home?

If you have any of these symptoms, there’s a good chance that it is your PV, and you should communicate to your healthcare professional the severity and how much they are affecting your life.

Moving on to the spleen. An enlarged spleen is common with PV. As your spleen works harder, it can get bigger. This can cause pain under your left rib or a feeling of fullness.

One of the symptoms associated with an enlarged spleen is abdominal discomfort, which occurs in 35% of patients.

Besides pain, here are some other spleen-related PV symptoms to look out for. The answers to the following questions can help you and your healthcare professional determine if your spleen may be enlarged.

Do you have abdominal discomfort, particularly after eating?
Do you experience abdominal discomfort at any other time—for example, when laying down flat on your back?

You may also find that you can’t eat a full meal because you’re experiencing a feeling of fullness. PV can cause your spleen to get bigger. Since your spleen is right near your stomach, it can press on it and make you feel full faster than you did before. Some questions that may help you communicate this to your healthcare professional can include:

Do you feel full quickly after meals?
Are you losing weight, and if so, how much weight have you lost over the last 6 months?

Another less common symptom is unplanned weight loss. If you’ve experienced this, make sure you share your answers to the following questions with your healthcare professional at your next visit.

Have you been losing weight without trying?
Have you lost so much weight that your regular clothes do not fit you anymore?

Another important symptom to identify is fever. This is a sign that your body is fighting off something. Frequent fevers can be a sign that your PV is progressing.

Are you experiencing fevers over 100 degrees?
How often are you experiencing a fever and for how long?

If taking your temperature has become so much a part of your daily routine that it seems normal, report it to your healthcare professional.

As you can see, some PV symptoms are easier to spot than others. That’s why it’s important to take a step back, give it some thought, and then track your symptoms. This PV Symptom Assessment Form is one way to do just that. Pay extra attention to anything that is making you feel out of sorts. Even small differences can affect your quality of life.

Remember the three words you need to know to understand how your PV is affecting you:

Symptom
Severity, and
Impact on quality of life

Once you’ve filled out the PV Symptom Assessment Form, take it with you to your next appointment with your healthcare professional.

Remember, any one of these symptoms can stop you from doing the things you love. If you have any of these symptoms, it is important to communicate them to your healthcare professional, as this may mean that your disease is progressing. Your healthcare professional has treatments that can help, so don’t wait.

Thank you for watching this video.