Pericarditis and UC/mesalamine

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deedee
Regular Member


Date Joined Nov 2016
Total Posts : 20
   Posted 3/11/2018 12:33 AM (GMT -6)   
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!

HJQuinn
Regular Member


Date Joined Jan 2018
Total Posts : 41
   Posted 3/11/2018 3:25 AM (GMT -6)   
Meds scare me too. I recently had a Pericarditis scare as well from the Remicade. It caused drug-induced lupus. I've tried several meds and haven't found one that doesn't cause horrible side effects. I'm attempting to manage symptoms on my own with some success. Drink lots of water, definitely chicken or other meat broth and gets lots of rest. I try to remember to take deep breaths and if I feel myself getting stressed about something I try to change my thoughts to another subject. Maybe make a to do list to look at later so you can take some time for yourself. If you haven't tried drinking broth I highly recommend it!! While you are deciding what steps to take next these are a couple of natural things that may possibly bring some relief in the meantime.

water
coconut water
chicken / beef broth
white rice

It may seem simple but it's what I'm doing right now and it's brought some relief. Once I realized there are antibiotics in our foods I switched to organic as well. Wish you the best.

Spring
Regular Member


Date Joined Jan 2017
Total Posts : 344
   Posted 3/11/2018 7:03 AM (GMT -6)   
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.
36yr old mother of 3 Moderate Pancolitis 1/3/17. Hosp 1 week on Solumedrol, Delzicol. Apriso, pred, then switched to Balsazide 750 mg, and Uceris 9 mg 3 wks. Minor flare in August, flare since Oct 20. Acute pancreatitis from Balsalazide hosp. 2 days, Started Humira 12/15/17, reaction, Entyvio 1/12/18. 40 mg of Pred, still waiting for a change!

quincy
Elite Member


Date Joined May 2003
Total Posts : 30596
   Posted 3/11/2018 10:47 AM (GMT -6)   
It's good yiu went to the hospital to have it checked out.
I don't think you will know for sure if it was the mesalamine since you are now on systemic prednisone. Pericarditis can also be caused by a virus, but its good you're off the mesalamine for now.

Hopefully, the cardiologist will give you more insight with complete testing and allow you to try the mesalamine in the future to be sure.

Please keep us updated.

q
*Heather* I give suggestions, do with them what you will.
Status: ...Asacol 3 @ 2x daily; Salofalk enema @ 3rd night (nightly/ flares, tapered/maintenance)
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol 20mg as needed; Zantac 150mg; Pulmicort/Airomir (asthma); Effexor XR 75mg (depression); Rosuvastatin 10mg (cholesterol); Telemesartin 80mg / Amlodipine 5mg (BP)
~vitamins/minerals/supplements; Probiotics....(RenewLife Ultimate Flora Critical Care + Genuine Health Advanced Gut Health 15 billion @ bedtime)
~Metamucil capsules 6 @ 2x daily with meals; Vitamin D 4500 IU
~URSO 500mg @ 2x daily for Primary Biliary Cholangitis
"TREAT (FROM)BOTH ENDS" worth it !!

iPoop
Forum Moderator


Date Joined Aug 2012
Total Posts : 12543
   Posted 3/11/2018 12:02 PM (GMT -6)   
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!
Moderator Ulcerative Colitis
John
, 39, UC Proctosigmoiditis
Rx: Remicade @5mgs/kg/6wks; daily 75mgs 6MP, 4.8g generic-Lialda, and rowasa

UC experience: wakeup with noisy bowels so no lingering in bed, soon after poop with discomfort/pain/mild-nausea, eat something, poop, get dressed, poop, leave in car and worry whole drive about more...

naturalcurl
Regular Member


Date Joined Nov 2010
Total Posts : 134
   Posted 3/11/2018 9:09 PM (GMT -6)   
Yes, please keep up updated. It will be very interesting to see what your doctors decide to do next. At least they are considering that there might be a mesalamine/pericarditis connection.

I have posted before about developing severe chest pain and shortness of breath after increasing Apriso from one to four pills. The doctors would not believe that Apriso might be the cause. That was in 2011. I started to get better when I stopped Apriso on my own. The same thing happened in 2012 going from 2 to 4 Lialda. I had never heard of "pericarditis" but the name started to pop up in following years.

So I am self-diagnosed with heart or chest inflammation at maximum dosage of oral mesalamine. I seem to be OK on two Lialda and I decline to increase the dose whenever the GI suggests it. By OK I don't mean UC (I wish), just no chest pain.

It would be helpful to know if your docs decide that you should avoid mesalamines forever. Also it seems strange that you would get heart inflammation from an enema, a topical medication. I have heard that the patient gets better quickly when mesalamine is stopped. Next they can carefully reintroduce the stuff and if the reaction returns...well then you have a clear answer and you and mesalamines will never be friends.

iPoop
Forum Moderator


Date Joined Aug 2012
Total Posts : 12543
   Posted 3/12/2018 6:36 AM (GMT -6)   
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

deedee
Regular Member


Date Joined Nov 2016
Total Posts : 20
   Posted 3/12/2018 11:51 AM (GMT -6)   
Thanks for your replies everyone! Will definitely keep this thread up to date with how my GI and the cardiologist react and where we go from here.

Interestingly, I wasn’t 100% on mesalamine but my doc figured it was just IBS and suggested the bloating and weird full/pain feeling would dissipate in 4-6 months or so. Well 3 days on prednisone and my colon feels absolutely fantastic! Better than I expected it could based on his suggestion. I know prednisone is never a long term solutation but darn I’m going to enjoy this while I can! :D

As often happens with post-ER follow up I’m having trouble getting the appointments I need urgently, so it may be a while before I have anything interesting to share!
Dx mild proctitis 2012; 25 cm moderate-severe inflammation Dec 2017.
Current meds: Salofalk suppository AM; Salofalk enema PM; Entocort enema PM (supposed to taper)
Suppléments: curcumin, Vit D, Calcium, B12
Diet: avoid gluten, dairy, red meat, alcohol, caffeine, sugar, and beans

deedee
Regular Member


Date Joined Nov 2016
Total Posts : 20
   Posted 3/21/2018 5:22 AM (GMT -6)   
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!
Dx mild proctitis 2012; 25 cm moderate-severe inflammation Dec 2017.
Current meds: Salofalk suppository AM; Salofalk enema PM; Entocort enema PM (supposed to taper)
Suppléments: curcumin, Vit D, Calcium, B12
Diet: avoid gluten, dairy, red meat, alcohol, caffeine, sugar, and beans

iPoop
Forum Moderator


Date Joined Aug 2012
Total Posts : 12543
   Posted 3/21/2018 6:58 AM (GMT -6)   
Glad you persisted and found it. Yes, we're much more prone to blood clots (DVT and pulmonary embolism are a couple of the more serious ones, but any type of clotting is possible) as UC patients. The highest risk of them is when we're flaring badly and sedentary. For those of us who've been hospitalized due to our UC, being put on a blood thinner during that time is common and a precaution. Being our own best advocate for what we need is essential, as our doctors can easily shrug us off when it shouldn't be!
Moderator Ulcerative Colitis
John
, 39, UC Proctosigmoiditis
Rx: Remicade @5mgs/kg/6wks; daily 75mgs 6MP, 4.8g generic-Lialda, and rowasa

"Don't make me angry. You won't like me when I'm angry." - Your colon

quincy
Elite Member


Date Joined May 2003
Total Posts : 30596
   Posted 3/21/2018 10:38 AM (GMT -6)   
Scary, but awesome you insisted on the abdominal ultrasound.

What's the new medication?

Please keep us updated how you're doing.

q
*Heather* I give suggestions, do with them what you will.
Status: ...Asacol 3 @ 2x daily; Salofalk enema @ 3rd night (nightly/ flares, tapered/maintenance)
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol 20mg as needed; Zantac 150mg; Pulmicort/Airomir (asthma); Effexor XR 75mg (depression); Rosuvastatin 10mg (cholesterol); Telemesartin 80mg / Amlodipine 5mg (BP)
~vitamins/minerals/supplements; Probiotics....(RenewLife Ultimate Flora Critical Care + Genuine Health Advanced Gut Health 15 billion @ bedtime)
~Metamucil capsules 6 @ 2x daily with meals; Vitamin D 4500 IU
~URSO 500mg @ 2x daily for Primary Biliary Cholangitis
"TREAT (FROM)BOTH ENDS" worth it !!

deedee
Regular Member


Date Joined Nov 2016
Total Posts : 20
   Posted 3/22/2018 6:24 AM (GMT -6)   
The new medication is enoxaparin (an anticoagulant), and I’m still on 30mg of prednisone to control the pericarditis and the UC at the same time. I had a totally horrible visit with my GI yesterday and am trying to get referred to someone else today.

In his view, my UC is mild so wouldn’t be causing any of this. In Dec we found 25 cm of moderate-severe inflammation and my experience was unpleasant — bloody loose stools, cramping, pain, urgency, the usual! Since then we’ve gotten the blood, urgency, and D handled but I have had lower left sided pain and bloating up until the prednisone for pericarditis. Anyway, he says this has nothing to do with my UC and therefore nothing to do with him. I asked what my maintenance med should be and he says I don’t need one and he therefore won’t prescribe one. WHAT THE HELL??!! It’s totslly reasonable to think this isn’t UC-related but to say we don’t need to treat it st all..?!!

It blows my mind to read so much literature about how patient compliance is crucial even in mild cases and that patients themselves are often the issue in not managing their disease. Here I am trying to be proactive about my own disease and have a doc telling me (1) I’m not his problem and (2) I don’t need maintenance and leave him alone until the next flare, essentially.

I hope to work with my GP to figure this all out but in the meantime wanted to keep posting in case anyone else finds themselves in a weird or similar situation.

quincy
Elite Member


Date Joined May 2003
Total Posts : 30596
   Posted 3/22/2018 11:37 AM (GMT -6)   
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
*Heather* I give suggestions, do with them what you will.
Status: ...Asacol 3 @ 2x daily; Salofalk enema @ 3rd night (nightly/ flares, tapered/maintenance)
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol 20mg as needed; Zantac 150mg; Pulmicort/Airomir (asthma); Effexor XR 75mg (depression); Rosuvastatin 10mg (cholesterol); Telemesartin 80mg / Amlodipine 5mg (BP)
~vitamins/minerals/supplements; Probiotics....(RenewLife Ultimate Flora Critical Care + Genuine Health Advanced Gut Health 15 billion @ bedtime)
~Metamucil capsules 6 @ 2x daily with meals; Vitamin D 4500 IU
~URSO 500mg @ 2x daily for Primary Biliary Cholangitis
"TREAT (FROM)BOTH ENDS" worth it !!

naturalcurl
Regular Member


Date Joined Nov 2010
Total Posts : 134
   Posted 4/7/2018 7:49 PM (GMT -6)   
So you have both pericarditis AND a liver clot? You picked the right word: "complicated"! You deserve a doctor who will look at the whole patient. Isn't that what they are trained to do? Are you scheduled to see a cardiologist?
Uceris failed. Lialda 2.4gm per day. Generic Rowasa daily for 2 years; tried less often due to trouble retaining. Thinking about Canasa. Diagnosed 2010. Diagnosis keeps changing every few years from UC to Crohns and back again; age: old (new to US Medicare)
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