To better understand recurrent pericarditis, and how its treatment and care are changing, we spoke with cardiologist Mohamed Al-Kazaz, MD. He's the medical director for the pericardial disease clinic at the Bluhm Cardiovascular Institute at Northwestern Medicine in Chicago.
He shares what he sees in the clinic and what he wants people with recurrent pericarditis to know.
Q: What is recurrent pericarditis?
Pericarditis is inflammation of the sac around your heart. It’s not something most people will ever deal with. And even if you do get it, it often happens once and gets better with treatment. But for some people, it can come back.
About 15% to 30% have a second episode. After that, the chances of another recurrence can be as high as 25% to 50%.
Recurrent pericarditis usually means your symptoms come back after you’ve had at least 4 to 6 weeks without them. But not everyone gets that clear pause. For some, symptoms never fully go away or keep coming and going. That’s known as “incessant” pericarditis.
Both forms need steady, careful treatment to get inflammation under control and lower the chance it comes back.
Q: What causes recurrent pericarditis?
We’re still learning why this happens in some people and not others. In many cases, it starts with a trigger. That could be a viral infection, heart surgery, procedure for an irregular heartbeat (atrial fibrillation ablation), or other health issue.
Treatment can usually calm the first episode. But in some people, the inflammation doesn’t fully shut off and can come back later, especially when we lower doses of anti-inflammatory therapies.
Some people with recurrent pericarditis have an autoimmune condition, like lupus or rheumatoid arthritis. But for many, it’s more of an auto-inflammatory problem. In either case, the immune system stays “on,” even after the trigger is gone.
Other things that can raise your chances of recurrent pericarditis include being female, having high levels of inflammation in your blood (like a high C-reactive protein, or CRP), and having had several past flares.
How your first episode is treated also matters. If treatment isn’t strong enough, doesn’t last long enough, or is stopped too soon, the inflammation can return. That’s why early diagnosis and the right treatment plan matter a lot in the beginning.
Steroids can help you feel better fast, but using them too early can also make future flares more likely. That said, they can still be the right choice for some people, especially if other drugs like NSAIDs aren’t safe for you.
Q: Why is sticking to the treatment so important?
Think of pericarditis like a knee injury. If you immediately rest and treat the inflammation, your odds of a speedy and successful healing go up. But if you keep running on it or stop treatment as soon as you sort of feel better, that can worsen the injury and extend recovery.
When the sac around your heart becomes inflamed, there’s a window where fully treating that inflammation can lower your odds of having it come back again. That’s why we use higher‑dose anti‑inflammatory medications right away and keep them going for weeks or months, not just a few days.
Commonly, NSAIDs (like ibuprofen or aspirin) and colchicine are used as first-line therapy. You also want to avoid intense exercise for at least one month, but some people need to take it easy for up to three months. This means keeping your heart rate below 100 beats per minute until your doctor clears you for activity.
Another key point is that inflammation can linger a lot longer than the pain. Doctors will wait to lower the dose of medicine until you’re completely symptom‑free and your inflammation markers are back to normal.
If any part of the plan feels hard to follow, speak up. Your care team can adjust it, but only if they know what’s not working for you.
Q: You followed the plan and still had a flare. Why?
Some people have a more persistent form of recurrent pericarditis. That means you can take your medications, follow activity limits, and do everything “right” and still have symptoms linger or come back when we lower your dose or stop treatment.
When that happens, it usually reflects the disease and not something you did wrong. It’s a sign that the underlying inflammation is still active and needs a different approach.
At that point, your care team will take a step back and reassess. That may include repeat lab work and imaging, like an echocardiogram or cardiac MRI, and a closer look at what’s causing the inflammation. From there, we usually shift the focus to controlling the disease over the long term.
Newer options, like biologics, may come into play. These include interleukin-1 (IL-1) inhibitors like anakinra (Kineret) and rilonacept (Arcalyst).
In the U.S., rilonacept is the only FDA-approved IL-1 inhibitor for recurrent pericarditis. Anakinra is approved to treat rheumatoid arthritis, among other conditions, but it’s sometimes used off-label for recurrent pericarditis that doesn’t respond to other treatments.
IL-1 inhibitors target a key small-signaling protein that drives inflammation in recurrent pericarditis. They work very well to reduce flares, improve your quality of life, help you wean off other medications, and give you more stability over time.
Q: If biologics can treat recurrent pericarditis, why not start there?
Biologics are medicines that target the immune system. They’re usually given as shots. They’re good, strong drugs, but most people don’t need them right away. They can also be expensive.
For many people, the first step is simpler treatment. If it’s your first recurrence, you might have a longer course of high-dose NSAIDs and colchicine. But long-term NSAIDs aren’t safe for everyone, especially if you have kidney problems or a history of stomach bleeding.
Steroids are an option. But these days, we commonly use them as a bridge given how well biologics work as long-term therapies.
We think about IL-inhibitors when:
- You keep having flares despite standard treatment.
- You can’t taper off steroids or NSAIDs without symptoms returning.
- Your lab tests show ongoing inflammation.
It’s not that we’re holding back better treatment. We want to match the medication to how the disease behaves. And many people improve without needing biologics or long-term therapy.
But if your pericarditis keeps coming back or is hard to control, IL-1 inhibitors can be a very effective next step. It’s always reasonable to ask your doctor if they might be right for you, especially if you feel stuck in a cycle of flares.
Q: What does long-term recovery really look like?
Think of it as a marathon, not a sprint.
The early phase is often the hardest. That’s when symptoms are strong and you may not fully understand what’s going on. But once you have the right diagnosis and a plan in place, things usually become more predictable.
Recovery isn’t the same for everyone. Some people improve within a few months. Others need treatment for a few years. Part of our job is to set those expectations early, based on your history and what we see on your tests.
The encouraging part is that most people start to turn a corner within a few weeks of the right treatment. From there, progress happens step by step. You ease back into your normal routine, including exercise, as your body heals. But this can be a long process.
Over time, many people get back to feeling like themselves again. Some are able to come off treatment completely. Others stay on longer-term therapy but feel well and active.
Research shows that when people stop a drug like rilonacept, about 75% may have a flare within about three months. That tells us the condition can act like a long-term (chronic) disease.
Rarely, symptoms don’t improve with medication or the side effects are too hard to manage. In those cases, surgery to remove the lining around the heart may be an option. This usually happens at specialized centers with teams who have a lot of experience.
The good news is that even for people who have more severe disease, we have options.
Q: Is recurrent pericarditis my fault?
No. You didn’t do anything to cause this.
As I said before, recurrent pericarditis often starts after something outside your control, like an infection, a surgery, or an underlying condition. For some people, the immune system just stays active longer than it should.
There are a few things that can help lower your chance of another flare. Staying consistent with your medications, keeping follow-up visits, and avoiding triggers like intense activity too soon can all make a difference. Staying up to date on vaccines and trying to avoid infections may also help.
But recurrent pericarditis isn’t your fault, and it’s not something you can prevent just by trying harder.
What is in your control is what happens next. Getting the right diagnosis, following a plan that fully treats the inflammation, and staying in touch with your care team can go a long way in helping you move forward.
Q: How has treatment for recurrent pericarditis changed in the past decade?
A lot.
We’re much better now at understanding what’s actually driving the disease. Imaging has become more precise, and we’re using it not just to diagnose pericarditis, but to track how active the inflammation is over time. That helps us make more informed decisions about how to manage care.
Treatment has also shifted from reacting to flares to preventing them. In the past, we were often putting out fires. Now, with options like IL-1 inhibitors, we can target the inflammation more directly. In many cases, the drugs can keep future flares from happening in the first place.
Care has also become more coordinated. Many centers now take a team-based approach and specialize in pericardial disease, where cardiologists, imaging specialists, and others work together. That kind of collaboration helps us move faster and tailor care more closely to each person.
Overall, we’re not just treating symptoms anymore. We’re managing the condition more proactively, with better tools and more options than we had before.
Q: When should you call the doctor if you think you’re having a flare?
Part of your care plan is knowing your early warning signs and acting on them. Reach out if you notice:
- Chest pain that feels similar to past episodes
- Pain that worsens with deep breathing or lying down
- New shortness of breath or unusual fatigue
- A sense that something isn’t right, even if symptoms are mild
When you check in early, we can:
- Order simple tests, like blood tests and an ECG
- Get an echocardiogram, if that’s needed
- Manage inflammation before it gets too severe
- Prevent fluid buildup around the heart (pericardial effusion)
- Help you avoid a more severe flare
Seek urgent care if symptoms are severe, different from your usual pattern, or come with significant shortness of breath, high-grade fever, or fainting.
But you don’t have to wait until your pain is at its worst before you reach out to your doctor. I’d rather hear from you when it’s a 1 or 2 out of 10 so we can act fast. In most cases, acting early can help prevent bigger problems later on.
