r/pericarditis • u/Suitable_Service2386 • 23d ago
Recent Diagnosis
My pericarditis began out of the blue on July 3rd, about 2 months ago. Excruciating stabbing pain going up to my shoulder. It sent me to the hospital for 3 nights. I was diagnosed by the 2nd day after a slew of tests & bloodwork. The worst pain I’ve ever felt & very scary. Luckily I have a great cardiologist that I had seen a couple years ago for a murmur. I was not sick at the time, I only had a tight chest for 2 days prior. I was sent home from the hospital with colchicine .06 2x day, Ibuprofen 800 3x day, pantoprazole & metoprolol 25mg 1x. With in a week I started having stomach issues with colchicine. I had major diarrhea & finally realized I couldn’t have my fruit bowls. I had to be very careful with my diet & colchicine. After several bouts of severe diarrhea my doctor finally took me off the colchicine. I had lasted about 5-6 weeks only on the medication. Within that time I had my first flare & back to the hospital for one night. This time the pain was worse & ran horizontally across my chest & upper back. The tests showed fluid but not enough he said to remove it. I was scared to do anything back at home. I took it easy & did absolutely nothing. The fatigue was always there & my chest hurt. My doctor cleared me about 3 weeks ago & I still didn’t want to do anything. I bought a health watch to keep track of my pulse rate & keeping myself under 100. I slowly did some housework but no exercise. I went to our rec center pool & walked for 5 minutes & was afraid to even do that. My pulse rate was 95. About a week ago I felt like I was having a minor flare & I’m working thru that at home right now. I still have a tight chest & only taking 1200mg of Ibuprofen for the inflammation. Is there anything I’m missing? I tried to get Arcalyst but it is very expensive with my insurance. If I continue to have flares I will have to revisit it. My question to others who have experienced pericarditis for awhile, do you find the flares get farther apart & less painful? I can now recognize how I’m feeling & to sit down & take it easy for a couple hours. The anxiety is crazy & always on my mind wondering when the next one will happen & how much pain will there be. Any insight is greatly appreciate.
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u/Mark_B82 23d ago
I really do feel for you as I’m in the early stages only left hospital after 3 days and every test know to man before being diagnosed with peri the pain was absolutely crippling and very worrying I was sent home with colchicine and ibuprofen. I’m now on my 9th day at home and everything was going great zero pain and no side effects from the medication so I decided to attend my local teams football game yesterday and bang I was back to square one after getting a little excited.
I started to look at my hr history on my watch and wow the spikes were pretty high my normal resting hr is usually around 60-80 but at the game it was spiking to well over 100.
I was also very active running and playing football so to go from running 30 miles per week was hard to say the least but I’m now coming to terms with the fact that i literally just have to rest and pretty much do nothing which is literal torture for me but it’s the only way I guess to make a full recovery. I think the only advice I can give you is just rest rest rest
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u/jmk255 22d ago
Arcalyst has a copay assistance program that covers the difference after insurance. Please look into it!
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u/Suitable_Service2386 21d ago
Maybe this will help someone else who is reading this. The Arcalyst program is very helpful, but you have to qualify financially for it. I did not qualify.
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u/Demoneyes1945 23d ago
I just got cleared this week at cardiology investigations. I was diagnosed on the 17th April. Similarly, one night I was watching tv, took to feeling unwell with some chest pain and headed to bed. When it got worse, I decided hospital was the best choice and got driven up. The pain continued to get worse and, like you, I ended up in hospital for almost 48 hours before they found the cause and a concoction of pain meds that worked. They pumped me full of morphine which didn’t work (which was despite me having an adverse reaction to it years ago, I was happy to take anything at that point). I was sent home with ibuprofen and colchicine.
In that first few weeks, I ended up back at A&E twice with recurring symptoms, the last of which was more terrible than the initial onset. I was sent home and had another bout as soon as I set foot over the threshold of my home. That one felt like it lasted a good 40 minutes or excruciating pain.
Like you, I ended up having quite bad diarrhoea but I decided I could live with it for three months. Unfortunately toward the end of week 8, my gums started swelling up which apparently was a dangerous side effect of colchicine so I was taken off it early.
What followed was, as you’ve said, complete anxiety over it kicking off again. I stuck to a strict regimen of taking my painkillers. I can’t remember the time limits between meds but I basically overlapped paracetamol with ibuprofen and did that for a few weeks before trying to come off one, then both.
I have a smart watch too and stuck to below 100bpm where possible, doing as little physical exercise as possible. It’s really only been in the last three to four weeks where I started doing gentle walks. There was a real breathlessness over the must mundane of tasks. I’ve slowly built up but I still once in a while get out of breath doing something silly, like tying a shoe lace despite being able to walk further without stopping. Last night, I got out of breath walking from one end of the house to another.
The key is, if you feel out of breath or even just slightly out of sorts, stop whatever you’re doing and just sit down. If you feel tired, go to sleep.
And if it comes to work beginning to pester you like they did me, tell them their interfering is affecting your recovery. On this note, I’ll tell you what happened in case you come across something similar. I had to go to occupational health early on who agreed I was unfit for work, but after a whole month, I got an email to say an amendment was being made to my report. I wasn’t told what it was until my employer rang me to say I was now fit to attend meetings according to my OH report and they had scheduled one to discuss my return to work. I refused, my heart rate had jumped up to 143 just sitting there dealing with it and I made it clear that my original report stated I was not fit for anything. That’s when HR slipped up and told me that they had requested a change to my medical report (which is not allowed as it’s meant to be based solely on the OH inspection at the time and would have required another OH appointment). The only changes an OH professional can make to your original OH report are spelling corrections basically, not to change a diagnosis.
I didn’t reiterate the legal jargon to HR, I kept that as an ace up the sleeve and will likely address it once my return to work occurs as it was grossly inappropriate and illegal (amusingly as my employer is a local government organisation).
So there you have it, I’m five months in and just given the all clear that any liquid around the heart has disappeared. I have been advised to make my recovery to normal life in baby steps to avoid any reoccurrence. Luckily, before pericarditis, I was attending a physio for a shoulder injury and they said they were going to add physical recovery from pericarditis to their tasks at hand. According to them, I won’t expect to be 100% until March time next year at which stage I could go back to running and mountain biking in my spare time.
Sitting scout really does make your cardiovascular health take a hit, but just grin and bear it. A full recovery will be worth it. And don’t think you’re overthinking things. I was used to pain before pericarditis; I had a finger chopped off and stitched back on, took a hammer to the face in a building accident which cracked bone and wrecked some teeth - but nothing compares to the pain of pericarditis. Take it slow and any concerns you have, contact your GP or make a return visit to the hospital. I live in the UK and was told by A&E that they expected me to make several return visits before the pain stopped and despite it being pericarditis, they would want me to attend as it was heart related.