How to Track Polycythemia Vera Symptoms and What to Do Next

Recognizing common polycythemia vera (PV) symptoms – such as night sweats, fatigue and itching – can sometimes be confusing. You might dismiss them as signs of getting older, but PV is a rare blood cancer that typically develops slowly.

"You are the key to noticing your PV symptoms so that they can be managed," says John Mascarenhas, MD, a Professor of Medicine and the Director of the Center of Excellence for Blood Cancers and Myeloid Disorders. "So be honest with yourself and your healthcare professional."

New or worsening symptoms can also be a sign your PV is progressing. That's why it's important to always discuss any changes to your health with your healthcare professional.

Are These PV Symptoms or Signs of Normal Aging?

It can be hard to tell whether your symptoms are related to PV or signs of getting older. Here are some ways to help you figure out the difference:

Fatigue – Pay attention to any changes in your energy levels. Ask yourself:

• Is the fatigue unexplained?
• Am I tired even after a good night's sleep?
• Is it difficult to get through the day?
• Do I have shortness of breath?

Itching – Ask yourself:

• Do I feel itchy after I shower?
• How often?
• Are there other instances when I feel itchy?

Bone pain – Don't mistake this for arthritis.

• PV-related bone pain doesn't feel like the localized joint pain of arthritis. PV pain is a deep ache throughout your body.

Night sweats – Can mimic the overnight sweating some women experience during menopause. Ask yourself:

• Was I experiencing night sweats a month ago?
• Are night sweats interfering with my sleep?

Brain fog – This is a common complaint of getting older.

• While it may be normal to misplace your keys from time to time, if you start to experience more consistent forgetfulness or trouble concentrating, it may be a symptom of PV.

Other common PV symptoms to watch out for include abdominal pain or discomfort, fever, and unintentional weight loss.

If you have any of these symptoms, it is important to communicate them to your healthcare professional, as this may mean that the disease is progressing. - John Mascarenhas, MD

Tracking the Severity and Impact of PV Symptoms

Take an Assessment of Your Polycythemia Vera Symptoms With Dr. Mascarenhas

Identifying your symptoms, their severity, and their impact on your quality of life.

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With the busyness of daily life, you might not notice every new symptom or recognize how frequently or consistently symptoms occur.

Even small differences can affect your quality of life. - John Mascarenhas, MD

That's why healthcare professionals suggest tracking how you feel every day over the course of several months. This will help them  know what's happening with the condition over time so they can build a treatment plan that's right for you.

To simplify the process, use this PV Symptom Assessment Form . It tracks three key factors: symptom, severity, and impact on quality of life.

Polycythemia Vera Symptom Assessment Form

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Start with any symptom you have. "Pay extra attention to anything that makes you feel out of sorts," says Mascarenhas.

Once you've identified the symptom, it's equally important to note the severity and frequency. Decide if the symptom you are experiencing is relatively mild, moderate, or severe. Then, ask yourself:

• How many times a week is this happening?
• How long does it last?

Finally, think about the impact of this symptom on your daily life. Ask yourself questions like:

• Has this affected my job? My relationships?
• Have I had to cancel plans because of it?
• Am I no longer able to participate in certain activities due to this symptom?
• Has it affected my emotional health, such as leading to feelings of anxiety, depression, or low self-esteem?
  

Communicating PV Symptoms to Your Healthcare Team

Your healthcare team will monitor your PV with periodic blood tests. They'll also keep track of your symptoms over the course of months - even years. The information they gather helps to create an individualized treatment plan. You can play a key role in your care by being open about the symptoms you're experiencing and coming prepared with questions.

Bring your completed PV Symptom Assessment Form to your appointment. This will ensure you remember everything you need to cover. Include as much detail as possible so your healthcare professional has a complete understanding of the symptoms you're experiencing.

Regular follow-ups are the most effective way to identify if and how the disease is changing. This is why it's important to be diligent about your appointments.

Your healthcare professional has treatments that can help, so don't wait. - John Mascarenhas, MD

Tracking PV symptoms can help you identify changes earlier, so discuss them with your healthcare professional and get the treatment you need. For more information and to help you recognize, track, and communicate about your symptoms, visit www.VoicesOfMPN.com .

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