By Elizabeth Morra, as told to Keri Wiginton
I’m 61, and I’ve lived with pericarditis for a few years. The good news is my doctor diagnosed me pretty quickly, but my first episode was scary.
I’m a higher education lobbyist in Washington, DC, so I’m used to moving fast. I spend a lot of time walking between buildings, rushing to meetings, and keeping up with a packed schedule on Capitol Hill. I’ve always been active, and I’ve never had trouble keeping up.
The morning my symptoms started, I woke up with a strange sensation in my shoulder — an ache just noticeable enough to make me pause, but not strong enough to stop me from moving through my day.
Everything changed when I got to the Metro.
I went down a flight of escalator stairs and rushed to catch my train, something I’d done countless times before. But this time when I reached my seat, I was out of breath in a way that didn’t make sense. And there was a huge amount of pain in my left shoulder.
When I got off at my stop and barely had enough energy to walk up the escalator, I knew something was really wrong.
I was supposed to fly the next day, and my mind went straight to a blood clot.
I called my primary care doctor right away, who saw me that same day. One test ruled out a blood clot, but I had other labs done. While I waited for answers, my symptoms kept getting worse. The pain spread across my chest, and the shortness of breath didn’t let up.
I can’t remember what the other tests were, but the results came back abnormal. Since I still wasn’t feeling well and had a flight coming up, my doctor sent me straight to the emergency room.
A Diagnosis I’d Never Heard Of
At the ER, they ruled out a heart attack right away. That was a relief, but it didn’t explain why I still felt like I was having one.
After hours of waiting, a doctor finally gave me some answers. She told me I had pericarditis. I’d never heard of it. She explained that it’s treatable and often responds well to anti-inflammatory medications like colchicine and ibuprofen.
In many cases, people recover within a few weeks and never have another episode.
She also mentioned my case was unusual. I was 59 at the time, and pericarditis is more common in younger people, especially men. Still, the plan seemed straightforward: Take the medication, rest, and let my body heal. But things didn’t go as smoothly as I expected.
When Standard Treatment Fails
Not only did those first medications not calm the inflammation, but I had a hard time tolerating them.
Colchicine is a prescription anti-inflammatory drug. It’s one of the main treatments for pericarditis, so I knew I needed to take it. But it gave me constant nausea and severe headaches that never really let up.
At the same time, I was taking high doses of ibuprofen every eight hours, which irritated my stomach so much that I needed another medication just to protect my gut lining. It felt like I was layering one problem on top of another without fixing the one that mattered.
Even though I was doing everything I was supposed to do — taking my medication, resting — I wasn’t getting better. The pain became constant. The shortness of breath got worse. I felt unstable, like something was wrong all the time. I was afraid to move too much or be alone.
My adult daughters were scared. They’d never seen me like that. My husband stayed close, especially at night, because neither of us felt comfortable with me on my own.
I kept going back to the emergency room, sometimes twice a week. Each time, my inflammation markers climbed higher. After a few weeks, doctors started to worry the inflammation could spread to my heart muscle.
Eventually, the head of cardiology at my local hospital said there wasn’t much more they could do. He called a pericarditis specialist at Johns Hopkins, who agreed to see me right away.
Searching for Answers
I was transferred by ambulance and spent nearly a week in the hospital.
At Johns Hopkins, they ran every test you can imagine: blood work, echocardiograms, EKGs. When they listened to my heart, they described a sound I’ll never forget. It was like two balloons rubbing together. That “pericardial rub,” along with the imaging and lab results, confirmed the pericarditis diagnosis.
I was very sick during that time, so they treated me aggressively with high-dose steroids and continued the other medications. My memory of the hospital stay is a little foggy, but I remember waking up drenched in sweat and feeling completely drained.
There was also a level of fear that’s hard to explain. More than once, I asked my doctor, “Am I going to die here?” He always gave the same answer: “No. You’re going to get better. This is manageable.”
A Different Kind of Treatment
Most people with recurrent pericarditis recover from their first episode but have a flare later. My case didn’t follow that typical pattern. I had "incessant" pericarditis, which means I never really got better in the first place.
My doctor treated me as if I’d already had a recurrence and suggested a newer option, one that could help me wean off steroids and the other medications that weren’t working.
Rilonacept (Arcalyst) is a weekly injection used for recurrent pericarditis. It targets a specific part of the immune system. I started treatment in mid-August. By the end of September, I felt a whole lot better. Not 100%, but getting there.
But even after the first couple of doses, I began to notice small changes. I could focus more of my energy on my job, and I could move around the house again. That was a big deal. I’d practically lived and worked in my chair for the eight weeks before that.
For me, rilonacept was a turning point. But treatment took some getting used to.
Learning to Manage Treatment
The medication doesn’t come ready to use. It arrives as a powder that you have to mix with sterile water. It’s a whole process: You have to switch out multiple needles, measure everything carefully, and then give yourself the injection.
A nurse came to my house to walk me through it the first time. Even with that help, I felt overwhelmed. The first few times I did it on my own, I cried. I was afraid I’d mix the medication wrong or have a bad reaction.
My husband offered to do the shots for me. But I wanted to be able to manage treatment myself. I travel for work and can’t depend on someone else every time I need a dose.
Over time, treatment has become part of my routine. I can do it in about 10 minutes. But it’s still something I have to plan around. The medication has to stay refrigerated, refills take coordination, and travel means bringing a special case to keep it cold.
It’s manageable, but it’s life-changing.
Going Off Biologics
I stayed on rilonacept for about two and a half years. During that time, life started to feel normal again. I could do the physical parts of my job, exercise as hard as I wanted, and travel without thinking much about my heart. If you met me, you wouldn’t have known anything was wrong.
Earlier this year, my doctor suggested we stop and see if my body could maintain that stability on its own. From what I understand, your chances of a recurrence go down the longer you’re on treatment. But it’s a new medicine, and there’s no set timeline for how long one person should take it.
There were also some open questions. My A1c and cholesterol had started to rise, and we didn’t know if that was from the medication, the inflammation, or something else.
So in late January, I stopped the injections. And for about six weeks, I felt fine, like maybe the whole thing was behind me.
When Pericarditis Came Back
Toward the end of February I started to feel off again, but in a different way than the first flare. This episode felt less like a heart attack and more like I was coming down with something, like a virus or allergies.
There was a vague pressure in my chest and a sense that something wasn’t right. The pain wasn’t as intense as the first time, but the feeling was familiar and unsettling. Then the shortness of breath came back.
I went to urgent care to rule out things like COVID or flu. Everything was negative. My doctor followed up with more blood tests. That’s when he saw that my inflammation markers were up again. “That’s it. The pericarditis is back,” he told me.
We tried going back to the standard medications: colchicine and ibuprofen. But they still weren’t enough for me, so I restarted rilonacept.
Now, after several doses, I’m starting to feel like myself again. I’ve gone back downtown for meetings and eased into exercise. I know I won’t have to take it easy forever. But for now, I keep my heart rate under 100, like my doctor advised.
I’m not all the way back yet. But I can see the progress. My doctor explained that inflammation builds up gradually and takes time to settle down. That advice has helped me be more patient.
Adjusting to a New Normal
I think about the future in a way I didn’t before all of this.
There are still a lot of unknowns. Will I need to stay on this medication long-term? Are the changes in my blood sugar and cholesterol related to it? Why did I get pericarditis in the first place? Do I have an autoimmune condition that just hasn’t surfaced yet?
But even with all of that, I come back to the same feeling: gratitude. I’m thankful this treatment exists and that my doctor knew to put me on it.
Since my first flare, I’ve made some changes in how I live day-to-day. I pay more attention to what I eat, cooking at home more often and being mindful about salt and processed foods. I’m still active, but I don’t have the same stamina. Heat affects me more than it used to, so I’ve learned to pace myself.
I also know how lucky I am. I have a supportive husband who checks in on me, and two daughters who are just the best. I have a lot to live for. And for now, my focus is to stay stable, take things one day at a time, and trust that this is manageable.
I hold on to the bigger picture. There’s a lot of research happening in the field of pericarditis, including new treatments, easier ways to take medication, and options that may prevent flares altogether. That gives me hope.
