Pericarditis and UC/mesalamine

I’ve been posting on here recently to get advice on getting over a recent flare, but something I never expected happened that I wanted to share! With Salofalk suppositories and enemas and Entocort enemas things were improving a lot, with a LT plan to taper the Entocort and stick on the mesalamine to continue healing/maintain it!

Cut to the other day when I suddenly started feeling really bad chest pain. about 2 hours in I decided to head to the ER “just in case” as I totally assumed it was a muscle thing and I was overreacting (but UC has taught me that’s preferable to underreacting!

Anyway, 10 hours, blood test, x-rays, and an ECG later, I was diagnosed with pericarditis. Given the rare but possible link to the UC itself (mine is also fairly limited — just the rectum and lower sigmoid) as well as to mesalamine, the gastro and internal medicine specialists on call recommended I discontinue all mesalamines until I can see my GI and a cardiologist next week and put me on 35mg of pred to hold over the inflammation in both my bowels and pericardium.

It’s a really frustrating setback to what was otherwise a flare getting under control and me feeling like I could start getting fully back into life! Also the mesalamine did work for me — albeit with the help of Entocort and over a few months. Not looking forward to the likely recommendation that I have to move to 2nd line meds, but obviously will do what’s needed for my heart!

I know there are other posts about this on here, but I guess I just wanted to share another and see if anyone has been in this situation and what/how you decided on next steps. Still struggling to get over the fear of the other meds,, especially since my UC has been tame recently! Even how you cope mentally with the feeling that it’s all a bit too much sometimes would be helpful. Still working on my coping strategies and this is a serious test of those!

For context: 27 y/o F; moderate-severe inflammation in the rectum/lower sigmoid; currently only on prednisone and want to have my head wrapped around other drugs by the time I see my GI on Tuesday!

I can't take mesalamines now because of acute pancreatitis that landed me in the hospital. I understand the frustration of having to move medications, though in my case the mesalamines were not working that well anymore. I am sorry you are going through this. I know for me it wasn't a very good feeling to be sent home on just steroids while flaring. I am on Entyvio now, and of everything, am most comfortable with its side effects as it is gut specific. Sometimes insurance won't let you start there, though. I had to do Humira first, but had a reaction.

Let us know how it works out! Mesalamine can cause various heart inflammation issues, in rare circumstances. It's possible yours could be mesalamine-induced, and if so, you should get rapidly better once you discontinue mesalamine. Could be from something else too, see what happens! Good luck!

There's case reports out there but it is pretty darn rare, so much so that your gasteroenterolgist practice might not have had a case before and might be slow to recognize it.

/www.sciencedirect.com/science/article/pii/S1878540914000681

For anyone following this thread, the plot has thickened (pun kind of intended, as you’re about to see). I’ve been waiting for my gastro/cardiology appointments but in the meantime went for an abdominal ultrasound that I had to convince my doc to order. I’d been experiencing upper right quadrant pain that didn’t feel like my UC and worried me, so he eventually conceded. Turns out they found a blood clot in my liver!!!

So two trips to the ER total and a new Rx later I’m being told this is probably just the result of my body being in an inflamed state and is UC-related. Ironically the last time I saw my gastro doc he was happy the disease activity was mild and I didn’t need to see him for 6 months! I had NO IDEA UC could be so complicated, and this has honestly been a nightmare few weeks.

The moral of the story is to please trust your body, pay attention to how you’re feeling, and advocate for yourself! If I hadn’t had this ultrasound who knows what could have happened — I still don’t even really know now what this means for me... to be updated soon I hope!

Scary, but awesome you insisted on the abdominal ultrasound.

What's the new medication?

Please keep us updated how you're doing.

q

Definitely dump him....sad how docs have their limits regarding stuff like that.

Let us know how it goes with your GP and if you get a new referral.

q

I just self diagnose myself with pericarditis as well, left upper chest pain and feel like I can't take deep enough breath. I was in the ER about 10 days ago they did blood work, xray, Ct angiogram and ECG and said everything was normal apart from my D-dimer test. but I still have the chest pain and am going for an ECHO on Monday. Just reading all information is very scary. I wanted to ask you how are you doing right now - did it resolve itself and how long did it take for you to get back to normal and how long were you on the meds?

thanks Naturalcurl,
I actually stopped taking mesalamines orally about 4 month ago, but still do enemas when needed. I think the pericarditis was caused by a virus I had month ago. I've done ECHO today and no extra fluid was found and my appointment with cardiodoctor will be on 6th of next month just have to hang on till then. I know what treatment there to fix it and not so sure I want to mess with ibuprofen or aspirin not to mention steroids. Does anyone know natural alternative to these anti inflammatory meds?

they did ecg and stethoscope too but I don't trust ER doctors at all, he didn't have a clue and was glad to see me going home. If I had any more severe pain before the appointment I'll go to my GP so she can have a listen