Living With Recurrent Pericarditis

Living with recurrent pericarditis isn’t easy. You might be feeling overwhelmed by the diagnosis, exhausted from the symptoms and worried if you’ll ever feel like yourself again.

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There’s a lot to think about and so much to carry. But you don’t have to shoulder this unexpected challenge on your own.

Cardiologist and pericardial disease expert Allan Klein, MD, is here to help. Dr. Klein offers guidance to help you navigate this condition and move forward one day at a time.

1. Take your prescribed medicines

You’ve probably heard it a million times already, but it’s worth shouting from the rooftop: Stick to the medication schedule your doctor gives you.

“Your medications are vital for reducing pericardial inflammation and helping you feel better,” Dr. Klein emphasizes. “Certain new drugs, like interleukin-1 blockers, can treat the acute episode and reduce your risk of recurrences. But they need to be taken exactly as prescribed in order to work.”

It can help to:

Set alerts on your phone so you don’t miss a dose.
Keep a log of each dose you’ve taken, including the day and time.
Store your medicines in one place so they’re all together (but out of reach of kids and pets).

2. Prioritize rest

When symptoms flare up, the pain and exhaustion might make it hard to even think about your to-do list, let alone tackle anything on it. So, you might naturally rest more simply because it’s impossible to do anything else.

But as you start to feel better, you may be tempted to jump back to your normal routine. But not so fast, urges Dr. Klein.

“Resting lets the pericardial sac recover,” he explains. “Your doctor will talk with you about how much rest you need and when you can gradually get back to your usual activities. Doing too much too soon can slow healing and prolong symptoms.”

Think of rest as a prescribed part of your treatment plan, just like a pill or an injection. It’s just as important.

3. Ease back into exercise

It can be really hard to stay away from a sport or workout routine you love, especially if you typically exercise to relieve stress. Now more than ever, you’re probably eager to get back to the gym or ballfield. But as you’re recovering from a pericarditis flare, taking it slow is the name of the game.

When you’re physically active, your heart rate goes up. That’s a good thing when you’re training or trying to strengthen your heart. But with pericarditis, your heart already has enough going on. It can’t handle that extra workload right now.

“Early on, you’ll need to keep your heart rate below 100 beats per minute,” Dr. Klein says. “So, that might mean walking the dog or doing some gentle yoga.”

Your provider will let you know when it’s safe to get your heart rate higher. They’ll help you gradually reintroduce exercise without overtaxing your heart.

4. Find sources of joy

Recurrent pericarditis can leave you feeling zapped of happiness and enthusiasm. But you don’t deserve to feel that way. Joy might look different from before, but it can still be found, and it can still be yours. Here are some ways you might discover it:

Try a new hobby. Look for activities that don’t tax you physically. Maybe it’s learning how to paint, quilt or make jewelry. Perhaps it’s joining a local birdwatching group. You might unearth an interest you never would’ve otherwise.
Adapt an old hobby. If that huge garden isn’t doable this year, maybe tend to some indoor plants instead. Missing jogs at the park? Go to your favorite trail, but find a comfy bench where you can take in the sights and sounds. Or if your doctor says it’s OK, take a short, gentle walk.
Reconnect with others. That long-lost high school friend? Give them a call. That great-aunt who still sends you birthday cards every year? Plan a visit and bring old family photos. You’ll likely find joy and share it right back.

5. Go to your follow-up appointments

It’s impossible to know what’s going on inside your heart just based on how you feel. That’s why follow-up visits are so important — even when you’re pain-free or feeling more like yourself again. Don’t skip any visits.

“Your doctor will run some tests to check on inflammation of your heart and make sure it’s healing,” Dr. Klein says. “They’ll also talk to you about your medications and any needed changes, like tapering a drug or introducing a new one.”

These follow-ups also give you a chance to share any new or changing symptoms and ask questions. It may help to bring a trusted friend or family member with you. They can help take notes and ask questions you might not have thought of.

6. Stay in contact with your care team

A lot can happen between appointments. If you experience a flare, have treatment side effects or just don’t feel right, let your doctor know. They may bring you in for additional testing or adjust your treatment plan.

“Keep the lines of communication open,” Dr. Klein advises. “Recurrent pericarditis can be unpredictable, but your care team is there to help you each step of the way.”

7. Talk about your diagnosis

If you’re comfortable doing so, tell friends and family about your diagnosis. This can help them realize how you’re feeling and what you’re going through. They’ll also be more likely to understand when you need to decline an invitation or suddenly change plans.

“Many people are unfamiliar with recurrent pericarditis and how debilitating a flare can be,” Dr. Klein observes. “It’s not like you can simply push through and attend that birthday party. But there’s a real education gap, and it means others may not understand what you’re going through unless you tell them.”

8. Stay current with your vaccinations

Your healthcare provider will talk with you about which vaccinations to receive (usually not live vaccines) and when. Infections can trigger heart inflammation and make matters worse if you’re already living with recurrent pericarditis. So, getting that boost to your immune system can make common infections like the flu and COVID-19 less hard on your heart.

9. Follow a heart-healthy lifestyle

Your heart has been through a lot. Here’s how to give it some TLC:

Avoid addictive substances. Alcohol, tobacco and recreational drugs aren’t good for your heart. They can lead to other problems, besides pericarditis, in the long run. Avoiding these substances can help your heart work at its best.
Manage heart disease risk factors. Talk with your doctor about your blood pressure, cholesterol, blood sugar and weight. They’ll help you set goals for each and a plan for getting there.
Eat heart-healthy foods. The foods you eat fuel your whole body, including your heart. Load up on whole grains, veggies and fruits. Avoid ultra-processed foods or foods high in saturated fat or sodium. These make your heart work harder.

10. Don’t carry it all alone

Recurrent pericarditis doesn’t just affect your body. It can also take a toll on your emotions and mental health. If you’re feeling sad, lonely or frustrated, reach out for support. This might mean connecting with:

Your doctor or others on your care team
Trusted family or friends
A mental health specialist, like a therapist
Pericarditis communities, like the Pericarditis Alliance

“There are networks of individuals living with pericarditis who want to share their stories and connect with others,” Dr. Klein shares. “Your experiences are unique to you, but you’re not alone. Others are ready to listen and offer advice and resources.”