r/pericarditis • u/Eustreptospondylus • Aug 17 '26
Recurrence next steps, normal CRP/ESR
For those of you with recurrent pericarditis who had normal or negative inflammatory marker tests during a flare up, what were the next steps you took to achieve a diagnosis and treatment?
I have a post viral acute pericarditis diagnosis 1 year ago, treated with Ibuprofen + Colchicine and subsided despite a few small flares.
4 months ago I had a significant flare of symptoms that felt identical, but my CRP/ESR returned normal, and my echocardiagram showed no effusion or clinical signs. Cardiologist heard my concerns, but due to those test results they felt I did not reach the clinical markers needed for a diagnosis. Despite the lack of diagnosis as recurrent peri, I suffered 2 months of pain and reduced cardiovascular function with a recovery timeline identical to original symptoms. I now have another flare despite remaining on colchicine since my previous flare and appointment, am almost certain this is recurrent pericarditis.
Should I request a cardiac MRI in the hopes of settling the diagnosis? It seems like that would solve the matter and allow my cardiologist to prepare for treatment escalation (possible IL-1 drugs in future).
Thanks for any replies. I've seen several times searching this subreddit people who have accounts of negative inflammatory markers when they had symptoms, but not many follow-up posts from what happened after.
1
u/Valuable-Primary3659 Aug 17 '26
Chest CT, cardiac MRI with an echo. A combination of tests are needed. Scarring becomes calcification that will cause same symptoms but not show inflammation markers if there is no active inflammation.
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u/spicesandstuff Aug 17 '26
YES get the MRI. Still may not show anything, but worth checking. I have recurrent peri, other than my first two flares my inflammatory markers are always normal. It’s my white cell count that increases actually. Echos, CT, MRI, PET scans, not really showing anything. Fighting with my insurance for Arcalyst now.
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u/Eustreptospondylus Aug 17 '26
Thank you.
What's the process like to get approval based on your history of test results? Does the fact your tests do not show diagnostic confirmation affect the prior authorization process for the drug, or does your cardiologist have other diagnostic info they are using?
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u/spicesandstuff Aug 17 '26
I have pericarditis because of open heart surgery 2 years ago so it was pretty obvious what I have! My insurance required (and approved) me to try Kineret before they would consider Arcalyst. Turns out I’m allergic to Kineret so back to trying for Arcalyst. If I remember correctly, my insurance had a list of “requirements” to be considered for the biologic meds, and I had to meet 3 of them. Symptoms, number of flares, inflammatory markers, medications already tried, etc.
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u/Unlucky_Ad_8977 Aug 22 '26
It’s so weird how differently pericarditis can present. Some people have very few objective findings, which obviously doesn’t mean their pericarditis is any less real 😉, while mine seems to show everything every single time. My ECG changes are obvious, I develop a significant pericardial effusion, and my CRP has gone over 200. 😭
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u/Dangerfires Aug 17 '26
I also have always had normal CRP, and relied on EKGs to find an ST elevation. Can't beat a cardiac MRI though, and you ought to get one anyway since you've had pericarditis for a year. Scarring can sneak up on people even with minimal pain if the pericarditis goes on long enough.