Doctor Discussion Guide

BE YOUR OWN BEST ADVOCATE AND SPEAK UP TO GET THE CARE YOU NEED

Make the most of your next doctor visit. By taking some simple steps, you can be better prepared to be your best advocate. Explore the items below that are designed to help you clearly explain to your doctor how recurrent pericarditis affects you on an ongoing basis.

Guide

Download the Doctor Discussion Guide.

This printable version of the guide below includes space for you to record information before your visit and write down answers to the questions you ask your doctor. Print it, fill it out, and take it with you to your visit.

Get The Guide

Before your visit

Given that recurrent pericarditis is a rare disorder, it’s possible that your doctor may not be familiar with your symptoms and treatment options. That’s why it’s important to plan in advance so you can get the most out of your visit. 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.

 

set appt

Set your appointment goals. Think about what you need to discuss with your doctor. This could include your symptoms and recurrences, your medications, how you feel, how your daily activities are affected by pericarditis, or questions about your diet and exercise.

 

make llist

Make a list of key medical information or keep a personal medical record. It can help to keep an updated personal medical record. This record can include a list of any health events you’ve had, results of past medical tests, and any prescription or over-the-counter medicines you’re taking. This can be especially helpful if you move to a new place or change doctors.

 

symptoms

Document the symptoms you have been experiencing. Have you had a recurrence since your last appointment? Have you experienced any new, persistent, or worsening symptoms?

 

notes

Take notes and/or record the appointment. Keep track of your doctor’s answers and recommendations. Ask your doctor 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 help you advocate, take notes, and ask questions.

 

speak

Speak up. You are your best advocate. If you don’t understand a test result or something your doctor 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

Ask for a treatment plan. Managing recurrent pericarditis is an ongoing process. Ask your doctor about treatment options and ways to manage your disease. It’s important to partner with your doctor to develop a personalized treatment plan that works for you.

 

Your health history

Share the issues and events that may have impacted your health in the past.

 

Pericarditis diagnosis. Tell your doctor if you were previously diagnosed with pericarditis. Be sure to include how many recurrences you’ve had and over what span of time they occurred (for example: “I’ve had 3 recurrences in the past 18 months”)

Recent health events. Tell your doctor if you have had any of the following prior to experiencing your current symptoms:

  • An infection (from a bacteria, fungus, or parasite)
  • A virus (such as influenza or COVID-19)
  • A heart procedure (such as getting a pacemaker)
  • Injury to your heart or pericardium (such as from a car accident, radiation, or chemotherapy)
  • Any other noteworthy health event

Other impactful effects. If your recurrent pericarditis has caused anxiety or depression, you are not alone. Individuals with recurrent pericarditis have reported that the condition can affect their emotions and quality of life. Tell your doctor if you have recently experienced the following:

  • Anxiety
  • Sleeplessness
  • Fear of your next flare
  • Interruption in your daily routine
  • Feelings of depression
  • Missing time at work

 

Your symptoms

Share all the symptoms you’ve experienced throughout your diagnosis journey.

 

Chest pain. Tell your doctor if you’re experiencing any of the following types of chest pain. Be specific. Don’t just say you’re experiencing chest pain—give details such as, “It gets worse when I breathe in or when I lie down.”

  • Intensified chest pain: Pain that becomes worse when you cough, lie down, or inhale deeply and becomes better when you sit up or lean forward
  • Traveling chest pain: Pain that moves from the chest into the left shoulder and neck
  • Sharp chest pain: A stabbing or piercing pain behind the breastbone or in the left side of your chest. Sharp chest pain becomes worse when breathing in or lying down
  • Dull chest pain: A dull ache or pressure behind the breastbone or in the left side of your chest. It may feel like a vise that is squeezing the heart. Dull chest pain becomes worse when breathing in or lying down

Other symptoms. Tell your doctor if you’re experiencing any of these signs of pericarditis:

  • Back, neck, or shoulder pain
  • Cough
  • Shortness of breath when lying down
  • Heart palpitations
  • Low-grade fever
  • Overall sense of weakness and fatigue
  • Anxiety
  • Swelling in the abdomen, legs, or feet
  • Any other notable symptoms

Download the print version of the Doctor Discussion Guide above. This version of the guide contains a symptoms worksheet to help you track your symptoms, their duration, what you were doing when they occurred, etc. You can take this tool with you to your doctor visit to help make it as productive as possible.

 

Your triggers

Different activities or events can cause a pericarditis episode.

  • Some individuals have reported that the following precautions may help avoid triggering pericarditis flares. This is not a comprehensive list. You may wish to talk to your physician about:
limit

Limiting caffeine, alcohol, excess heat, stress, and periods of elevated heart rate
 

100

Trying to regulate strenuous exercise. Exercise may trigger a recurrence, and physicians have advised individuals to keep their heart rate under 100 beats per minute with moderate activity. Some individuals with pericarditis have reported using a fitness tracker to keep track of their heart rate

  • Think about your triggers to discuss with your doctor. If you have a repeat pericarditis flare, consider what you may have been doing, or how you were feeling. Did you drink caffeine or feel stress before your symptoms began? Was it a hot day? Were you exercising? By identifying and tracking your triggers, you can work to avoid future pericarditis recurrences

 

Ask questions

Be your own best advocate. When seeking care for recurrent pericarditis, it is important to educate yourself about the disease and be part of the conversation. Here are some important questions to discuss with your doctor.

 

  • What might be causing my pericarditis (or recurrent pericarditis)?
  • Are there additional diagnostic tests, such as an echocardiogram or MRI that we should consider?
  • What treatment approach do you recommend?
  • What are the side effects of the recommended treatment?
  • When should I expect resolution of my symptoms?
  • What should I do if my symptoms do not resolve or if they reappear?
  • Am I at risk for long-term complications?
  • Aside from medication, do you recommend any other lifestyle changes or management approaches?
  • Are there any other specialists you would recommend I see as part of my disease management? (A hematologist? A dietitian? A therapist to help with stress?)

 

KEEP UP TO DATE ABOUT PERICARDITIS

Access the latest information about recurrent pericarditis community resources, news, and research, including information about services and programs that Kiniksa Pharmaceuticals offers or sponsors.