How pericarditis and recurrent pericarditis are diagnosed

Getting a diagnosis

Healthcare providers have specific ways of determining if you are experiencing a pericarditis flare.

Ruling out heart attack Evaluating medical history Listening to the heart Looking at the heart Taking blood tests

Ruling out heart attack

Your healthcare provider should perform tests, such as an electrocardiogram (ECG/EKG), to determine if you are having a heart attack.

Evaluating medical history

Your healthcare provider may ask questions about your medical history:

Previous illnesses
Past medical procedures
Other possible conditions (especially autoimmune conditions, including lupus or rheumatoid arthritis)

Most importantly, your healthcare provider may ask if you have had a previous pericarditis flare and how long it has been since your last one.

Listening to the heart

Your healthcare provider may listen to your heart for a special sound called a “pericardial rub,” which happens when the inflamed layers of the pericardium rub together.

Looking at the heart

Your healthcare provider may perform 1 or more imaging tests to examine the physical condition of your heart.

X-ray: to check for enlargement of the heart and pericardium
Echocardiogram: uses sound waves to produce an image that shows how well your heart is working and if there is any extra fluid in the pericardium (called pericardial effusion)
Computed tomography (CT) scan: for a more detailed picture of the heart and pericardium to rule out other conditions
Cardiac magnetic resonance imaging (MRI): to take pictures of your heart to show if there is swelling (inflammation) in the pericardium

Taking blood tests

Your healthcare provider may obtain a blood sample to look for special markers that suggest inflammation:

Elevated levels of C-reactive protein (CRP) and/or erythrocyte sedimentation rate (ESR—also called “sed rate”) indicate underlying inflammation

Distinguishing recurrent pericarditis

Flares from first or one-time episodes of pericarditis and recurrent pericarditis not only share similar symptoms, they even look similar on medical test results.

Recurrent pericarditis is when a first flare goes away either on its own or after treatment, then another flare occurs more than 4 weeks later.

To get the correct diagnosis and treatment for recurrent pericarditis it is crucial that you keep track of when a flare stops and another one begins, so you can give your doctor the information they need.

Learn about a treatment for recurrent pericarditis

Preparing for your visit

Your treatment journey may start by seeing your family doctor or visiting the emergency room. During your visit, it is important to explain your symptoms in detail so you are referred to a doctor trained in heart conditions (a cardiologist).

When seeking care, it is important to educate yourself about the disease and prepare for your doctor visit, because advocating for yourself will help ensure that you get the best care possible. It is especially important if you have been diagnosed with or suspect you have recurrent pericarditis.

Recurrent pericarditis is a rare disorder and it’s possible that your healthcare provider may not be familiar with your symptoms and treatment options. Even if you’re seeing a specialist, be sure to come prepared so you can ask the right questions to receive the best possible care.

Real takes

When did the physician first use the word “recurrent”

Joao

A medical student who is living with recurrent pericarditis gives us his take on diagnosis and treatment issues.

GET THE MOST FROM YOUR APPOINTMENT

Download your Doctor Discussion Guide.

What is Pericarditis Doctor Discussion Guide

Download

Be your own best advocate for getting the care you need. This guide includes tips to prepare for your visit, questions to ask your healthcare provider, and space to record important information such as your health history, symptoms, and triggers. Print it, fill it out, and take it with you to your visit.

Steps to prepare

Set appointment goals

What do you need to discuss with your healthcare provider? This could include the symptoms of your flares, your medications, and/or how recurrent pericarditis affects your daily life.

Document the symptoms you have been experiencing

Print the Doctor Discussion Guide and use it to help explain your symptoms. Have you had a flare since your last appointment? Have you experienced any new, persistent, or worsening symptoms?

Think about your questions

Start with the list included in the Doctor Discussion Guide and think about any additional questions that you want to discuss with your healthcare provider.

Take notes and/or record the appointment

Use the Doctor Discussion Guide or a notebook to keep track of your healthcare provider’s answers and recommendations. Ask them if you can record the appointment using your phone so you can reference it later. You can also bring a friend or family member with you to take notes, ask questions, and help advocate for you.

Make a list of key medical information or keep a personal medical record

Keeping an updated personal medical record can be very useful, especially if you move or change healthcare providers. Consider recording information on your flares, results of past medical tests, and any medicines you’re taking.

At your appointment

Speak up

If you don’t understand a test result or something your healthcare provider says, ask them to explain it in more detail. It’s OK to ask for specific tests or to see a specialist, such as a cardiologist, for a consultation.

Ask for a treatment plan

Managing recurrent pericarditis is an ongoing process. Ask your doctor about treatment options and ways to manage your disease.

Learn about a treatment for recurrent pericarditis

Did you know?

Getting treatment for recurrent pericarditis as early as possible can help avoid serious issues with your heart that can affect how well it works.

THE IMPORTANCE OF BEING YOUR OWN BEST ADVOCATE

With a “rare disease” like recurrent pericarditis, it is especially important that you communicate with your doctor how the disease is affecting your life and what you need from treatment and from your care team.

These results from a Harris Poll survey of 125 people living with recurrent pericarditis showed that while the disease had a significant impact on their lives, both physically and emotionally, there is a need for better communication between doctors and their patients with recurrent pericarditis.

IMPACT OF RECURRENT PERICARDITIS

98^%

feel that recurrent pericarditis disrupts their life in the time between flares.

90^%

experience negative physical, mental, or emotional impact from flares even after a flare has resolved.

86^%

worry they could have a flare at any time.

74^%

have withdrawn from many aspects of life due to fear or anxiety about having a flare.

70^%

missed important events or functions because of their recurrent pericarditis.

QUALITY OF COMMUNICATION

Respondents said they had to go to an average of 3 doctors before being diagnosed.

88^%

want their doctor to ask more questions about recurrent pericarditis and/or flares.

85^%

often feel they “fall through the cracks.”

90^%

would like a treatment that prevents future flares better than their current treatment.

This survey was conducted online within the United States by The Harris Poll on behalf of Kiniksa Pharmaceuticals from May 4 to June 1, 2023, among 125 US adults ages 18+ who have been diagnosed with recurrent pericarditis and are not currently pregnant or breastfeeding and have never used/are not currently using an IL-1 antagonist. The sampling precision of Harris online polls is measured by using a Bayesian credible interval. For this study, the sample data are accurate to within +/- 8.7 percentage points using a 95% confidence level.