By Luigi Adamo, MD, PhD, as told to Keri Wiginton
If you’re reading this, you may have just been told you have pericarditis. Or maybe you’ve already been through one episode, or more, and you’re worried it might come back. That anxiety is very real.
As a cardiologist who runs the pericarditis clinic at Johns Hopkins Medicine in Baltimore, here’s the key thing I tell people with this condition:
Even though pericarditis can be painful and scary, it’s usually one of the milder heart conditions. It’s rarely life-threatening. And we now have advanced treatments that can dramatically improve symptoms and help you get back to a normal, active life.
I’ll walk you through what’s changed in our understanding of pericarditis and what that means for your treatment options now and in the future.
We Know More About Why It Comes Back
Not long ago, doctors often said recurrent pericarditis had no clear cause. You may have heard the term idiopathic, which means we don’t really know why something keeps happening. But our thinking around that has changed.
Sometimes we still don’t know exactly what sets it off, but we now have a much better understanding of what’s happening in the body.
Over the past decade, research has shown that most of these cases are driven by a part of the immune system called interleukin-1 (IL-1). IL-1 normally helps the body create inflammation to fight illness or heal injury. But if the signal stays on too long or turns on too easily, it can damage healthy tissue.
We’ve learned two key things about IL-1:
- Many people with recurrent pericarditis have changes in genes linked to IL-1.
- Drugs that block IL-1 can stop symptoms and flares in most people.
That’s a big shift in how we understand and manage recurrent pericarditis. A condition we once thought of as mysterious and hard to control is now, in many cases, highly treatable.
We Still Can’t Predict Recurrence
You might be wondering: Can my doctor test me to see if pericarditis will come back?
Right now, the answer is: no.
If you’ve had pericarditis once, we don’t have a blood test or scan that can tell us whether you’ll have another episode. But we do know that recurrence usually happens within the first six months. And about 1 in 4 people may have a second episode.
We also know that certain things make recurrent pericarditis more likely, such as:
- A more severe first episode that doesn’t respond swiftly to treatment
- Not getting effective treatment the first time
- Using steroids too early
- Not taking colchicine, or not taking it long enough
- Stopping anti-inflammatory medication too soon
Even with that information, we still can’t predict what will happen for any one person. And even after recurrence starts, we can’t tell who will have a few episodes and who may deal with it longer. That’s something researchers are still trying to figure out.
Why Your First Treatment Matters
For most people, I start with two main medicines: colchicine and a high‑dose nonsteroidal anti‑inflammatory drug (NSAID), such as ibuprofen. You take the NSAID a few times a day for several weeks (typically six weeks), along with colchicine once or twice daily, to fully calm the inflammation.
As your symptoms improve and your blood tests return to normal, we slowly lower the dose of the NSAID. But we still want you to take it three times a day so the drug covers the full 24 hours.
I always stress that NSAIDs don’t last all day. One or two pills per day aren’t enough. You need regular dosing three times a day to fully suppress the inflammation. That’s why we reduce how much you take each time, not how often you take it.
If this is your first episode, you’ll usually take colchicine for three to six months. If pericarditis comes back, we often continue longer.
I also suggest limiting physical activity while your heart is still healing. That means avoiding exercise that keeps your heart rate above 100 beats per minute for a long stretch of time.
The goal is to give the inflammation time to fully calm down without added strain.
A short spike in your heart rate from stress or anxiety isn’t as much of a concern. It’s steady, sustained activity — like running or intense workouts — that can make symptoms worse.
IL-1 Blocking Drugs: Do They Reset the Disease or Just Suppress?
IL-1 inhibitors have changed how doctors treat recurrent pericarditis. These drugs target a key part of the immune system that drives inflammation. Instead of just easing symptoms, they shut down the signal that keeps the cycle going.
In the U.S., the main option is rilonacept (Arcalyst). It’s the only FDA-approved IL-1 inhibitor for recurrent pericarditis. Anakinra (Kineret) is another IL-1 inhibitor sometimes used off-label for this condition, but it’s used more commonly in Europe than in the U.S.
For many people who take IL-1 inhibitors, the effect is dramatic. Their chest pain and other symptoms go away, and their inflammation markers drop. Imaging often looks normal again. Some people say they feel like themselves for the first time in months.
These drugs are usually used when:
- Symptoms keep coming back despite NSAIDs and colchicine
- Steroids are needed but cause side effects
- The disease becomes hard to control or affects daily life
Many people stay well while on IL-1 inhibitors. But for a lot of people, symptoms come back after they stop. Studies suggest that more than half of people will have another flare. Some research shows the risk may be as high as 75% after stopping treatment.
That tells us these drugs usually suppress the disease rather than cure it.
When it comes to IL-1 inhibitors, we have some option questions:
- Which patients can stop taking IL-1 blocking drugs without any recurrence?
- Which patients might flare right away vs. months or years later?
- How long should each person stay on treatment?
If you start an IL-1 inhibitor, expect to stay on it for a while. Many specialists aim for somewhere between six months and two years, then carefully taper the treatment and watch for symptoms.
For now, treatment focuses on keeping inflammation under control. But you’ll likely have more choices in the future. Science is moving from simply controlling the disease to trying to stop the cycle.
What’s New in Clinical Trials
There’s a lot of active research focused on making treatment easier and more effective. I’m involved in a couple of these studies, and they reflect where the field is headed.
One is testing a new IL-1 blocker that you take once a month instead of once a week. It works a little differently from the current options and is designed to be easier to use, like a ready-to-inject pen you can use at home. For people who need long-term treatment, that kind of convenience can really matter.
We’re also looking at ways to stop inflammation earlier in the process.
Right now, most of our treatments block IL-1 after your body has already made it. That works well to control symptoms. But we’re trying to understand how to shut down the signal that leads to IL-1 in the first place.
One of the main targets is something called the inflammasome. This is part of your immune system that helps turn on IL-1. If we can block that step, we may be able to prevent inflammation before it starts.
There are a few treatments in development that are trying to target the inflammasome. Some are oral medications, which could make treatment easier if you’d rather avoid needles. These experimental treatments aim to “reset” the immune system problem that drives recurrent pericarditis.
One example is an oral solution called CardiolRx. It’s based on a lab-made form of cannabidiol, or CBD. This form doesn’t have the “high” people often link to cannabis. Instead, it’s designed to target inflammation.
Early studies suggest CardiolRx may help reduce flare-ups. A larger trial is now underway to see how well it works in people who’ve already been treated with IL-1-targeting drugs.
The bigger goal with all of these treatments is to go beyond just managing symptoms. In an ideal world, you could stop an IL-1 inhibitor and not have the pericarditis come back.
We’re not there yet. But that’s exactly what these trials are trying to figure out.
What This Means for You
If you or a loved one has pericarditis, it’s normal to feel overwhelmed at times, especially if symptoms come back or don’t respond to treatment right away.
The reassuring part is that pericarditis is usually not dangerous. It rarely leads to long-term heart damage or affects how long you live.
Even when it recurs, we now have better tools to control inflammation and prevent flares. Many people can get their symptoms under control and return to their usual activities with the right treatment plan.
If your symptoms are hard to manage, or if you keep having recurrences, see a specialist.
Some centers focus specifically on pericarditis and have experience with newer therapies and more complex cases, like when pericarditis is the result of another health issue like lupus or rheumatoid arthritis. The American Heart Association’s Addressing Recurrent Pericarditis page can help you find one.
If you’re interested in clinical trials, talk with your doctor about whether one might make sense for you. You can also search clinicaltrials.gov to see what studies are available.
The key takeaway is that we’ve made real progress in how we understand and treat pericarditis, especially symptoms that come back. Now, the focus is shifting from controlling each flare to understanding how to keep the disease quiet over time, and when it may be safe to step away from treatment.
Adamo is a consultant for Kiniska Pharmaceutical (the producer of Arcalyst) and for Novo Nordisk. He’s also co-founder of i-Cordis LLC, a start-up company focused on developing immunomodulatory therapies for heart failure.
