Myocarditis?

Over the last few months, I’ve had symptoms of shortness of breath and mild chest pain / pressure. It’s particularly noticeable on mild exertion, but is only intermittent, and comes as a part of a flare.

I’ve been meaning to follow it up with my GP for ages, but I have had so many other (mostly non-PsA related) health issues it just fell by the wayside. I kind of assumed it was just extra effort going into exercise from the flares, but recently I noticed it in situations that my normal level of fitness should not have found at all challenging, and I wasn’t really in pain so couldn’t blame that.

Recently I had an emergency admit to hospital with mild chest discomfort and severe pain radiating to my upper back. It was coming in waves though, triggered by swallowing. Because it was connected to my GI tract and I have Crohn’s, that was the focus. Though they kept worrying about my heart because the rate was so high (my resting and day-to-day is 60-70 and I had about 135 on admission despite having lots of pain relief on board). I told them it had been high for a week or two since I had been feeling generally unwell. I also had a persistent fever, so they were freaked out about the idea off a hidden infection.

Four (relatively normal I assume) ECGs, a chest X-ray, CT scan and a lot of PPI inhibitor and 24 hours of monitoring later, I was released with no specific cause. My Crohn’s in my mouth had started to flare up and it was obvious I had an acute inflammatory flare going on.

Now, with a bit of hindsight, I am starting to wonder if I get mild Myocarditis with some of my flares. I will go to the GP about this next week, but just thought I’d float it here to see if anyone else (@tntlamb?) has had a similar experience.

PS I started prednisone yesterday and it seems to have dropped a bit already. Might start tracking it out of curiosity.

What about pericarditis? It can occur with minimal fluid in the pericardium

1 Like

So would that mean it wouldn’t show up easily on a CT scan or X-ray?

But I think in pericarditis the ECG is much more often abnormal, which is why I’d been wondering about myocarditis (where it is only abnormal about 50% of the time).

But it certainly could be that. Breathing deeply didn’t bring in more pain though, which I thought was usual for pericarditis? I will have to see if the GP can get the bloods from the hospital. Hopefully they did the cardiac markers - seems like that doesn’t rule out myocarditis or pericarditis, but suggests low severity / good prognosis even if that’s what it was.

I can’t help but dear god @Jen75 are you going through the mill in all ways presently. So I just wanted to give you a cyberhug. Lots of them xx

1 Like

Thank you Poo, it is so wonderful to have you thinking of me, I can feel the warmth in those cyberhugs all the way from over here!

1 Like

Low severity whatever would definitely be a good thing. Mine got progressively worse until I started treatment for it. And yes I had all of that work up done with the cardiac markers and the CT and all that good stuff. Hopefully you’ll be feeling better soon regardless. It is not surprising that you were able to call it with other information.

So did your initial work up show the pericarditis, or was it negative /ambivalent and did you have to persist with seeing a specialist and get further investigation before diagnosis?

I feel a bit like I am going nuts. As Poo said, I’m going through the mill at the moment, but as most of its not PsA related, a lot of it doesn’t come up here. The sheer number of new inflammatory type symptoms is literally overwhelming, and they often come and go so fast (but with pretty breathtaking severity from my point of view) there is absolutely no way I can get in to see a specialist to observe or investigate them. It’s almost like my body is having rolling allergic reactions.

On the list for referrals I have to ask my GP for already is an oral-maxillofacial surgeon, an immunologist, and a specialist Hematologist. And now I’m wondering if I need to add cardiologist.

But when I get discharged from hospital without anything conclusive, despite having some pretty solid observable issues (temperature, heart rate, even if you set aside the pain), I start to feel literally crazy.

This is the second emergency admission in two months, last time it was mimicking pancreatitis but the scans were clear (thankfully - not a desired disease!).

Roll on Remicade. First infusion pencilled in for 27 October!

Oh. We have this new system in Aus and I was just able to access all the tests online. I assumed cause they discharged me without discussing it, that the ECGs and cardiac bio markers were normal. Nope. Not diagnostic of anything, and not off the charts, but out of range. Well, that doesn’t make me happy, but at least I don’t feel so crazy.

Trip to the GP next week, guess cardiologist is added to the list.

1 Like

@Jen75 your current issues are troublesome enough that you’ve taken my mind off of my own pains, thanks! Wishing you good news ahead, prayers said for you!

1 Like

Gosh you must be also going out of your mind with worry too. I like to understand things however bad and I’m guessing you do too. It’s that bit which would drive me crazy, as in no one is trying to connect all the dots and explain to you what’s happening in your body. Lots more cyber hugs. xx

1 Like

Yes, it is a bit frustrating. Our EDs are are long way from the type of diagnostic skills you see on House or the Good Doctor. They didn’t even do a CRP :roll_eyes:

Anyway, I’ve done enough research today to see they really didn’t follow up the loose ends that need investigation, and it’s not likely to be “nothing”. So I googled and think I’ve found the most appropriate cardiologist clinic in my local area, so I’ll start there.

My initial work up to was to rule out the awful stuff, like a pulmonary embolism. I do not believe that I had the echocardiogram for at least a few weeks, and I actually didn’t show fluid and the pericardium until a later point. Mine quickly became chronic partly because I was treated with steroids after I had a bad reaction to the indomethacin. I’m actually still on colchicine and I think it’s been almost 3 years now.

Thanks Stoney, you are teaching me lots of things - I’m only just learning this heart lingo!

After lots of reading I’ve realised my initial work up was just to rule out the awful stuff too - specifically a heart attack, though pericarditis did occur to them and they double-checked the X-ray, but it sounds like that’s not real sensitive. I had properly elevated Tropinin I though, which is very specific to heart damage, so with the symptoms is would be silly not to investigate further. I haven’t had an echocardiogram (silly me thought that was the same as an ECG), so hopefully that will be part of the rest of the puzzle.

Symptoms and signs definitely fits quite well to an autoimmune associated myocarditis with the limited info I have so far (but incredibly rare - so not for anyone else to worry about).

Thanks to everyone for their input here @Stoney @Poo_therapy @Amos - it has been a tough week and it was wonderful to hear from all of you and feel a little less like I am going crazy in the dark by myself :joy:

2 Likes

Keep sharing the awful journey though for you and us lot need reminding that PsA is nonetheless a systemic disease. Inflammation, whatever it’s name be it PsA or Crohn’s or both, causes all sorts of weird stuff regardless. And if it helps I’m presently being investigated for ‘gut inflammation’ too this week, first of all of course ruling out cancer. Having a colonoscopy on Friday finally, once I had finally persuaded them of the level of sedation I required which wasn’t the amount which kept me awake, at all. I’m less bothered now than I was at the beginning as symptoms have virtually resolved now but… Hopefully you’re getting on the phone first thing this morning to organise better cardiac stuff to clarify your puzzle. More hugs. xx

2 Likes

Thanks @Poo_therapy, I’m just trying to find a cardiologist that does this sort of stuff - think I finally have - so I’ll be able to make an appointment tomorrow hopefully :crossed_fingers:. I’ve been told to expect up to 6 weeks wait, so I’ll update once I have the appointment.

@Stoney a question for you - did they link your pericarditis to PsA? And if so did you try a different biologic to see if that would work before the NSAIDS and colchicine? I’m on steroids again now, hope I’m not at risk of marking things worse. I am finally starting to feel better though.

Also @Poo_therapy do let us know how the colonoscopy goes - I wondered a bit after benepali hated you so much - Enbrel was great on my joints but was the start of a Crohn’s flare - hard to know if it was that or because I was tapering off long term steroids. Glad they are taking it seriously and hopefully getting you some more definitive answers.

Cardiology aside, you may want to have a LONG discussion with your rheumy about Behçet’s disease. It has been most recently recognized as a common co-morbidity of PsA. It has all of the Cardiac symptoms that have been discussed above. No tests can determine whether you have Behcet’s disease , so your doctor will rely primarily on your signs and symptoms. Because nearly everyone with the condition develops mouth sores, mouth sores that have recurred at least three times in 12 months are generally necessary for a diagnosis of Behcet’s disease. If you have had any success with colchicine, that is helpful as well. You can start your research here: https://www.rheumatologyadvisor.com/home/topics/vasculitis/behcet-disease-associated-with-increased-risk-for-psoriasis-and-psoriatic-arthritis/ There is a larger study in phase 0 to phase 1 just getting started. Don’t have the details quite yet. My Cardiologist is a part of the testing Cohort. They are doing some nuclear MRI studies of the heart as routine testing is not sensitive enoungh. Eleveated Tropinin is not uncommon as are other Cardiac Markers and the diseases is often over looked.
Acute coronary syndrome in Behcet’s disease caused by a coronary artery aneurysm and thrombosis

1 Like

Thanks @Jen75. I don’t think the Benepali hated me that much but sulfasalazine certainly hated Benepali and I was on both together. I was on Benepali for 11 months and it only worked for three months anyway, right in the middle of that 11 months too. There is a known issue between sulfasalazine and ‘enbrel’ which is rare but muggins here had to develop it, hence the diarrhoea for 7 very long weeks landing me in hospital at the end. Once I stopped the sulfasalazine and continued on with the Benepali all diarrhoea and other digestive issues stopped within 24 hours.

When I tried Imraldi next (biosimilar to Humira) poo output (sorry far TMI) increased substantially. Not quite diarrhoea but significant. Due to that, plus it reigniting my very dormant asthma and indeed making me feel like I was walking through an impending sense of doom, my experience with that lasted a mere 8 weeks.

Odd isn’t it that two meds commonly used for IBD issues too, namely sulfasalazine and humira, made my gut scream so loudly in protest.

My present worry is that Cosentyx is known for increasing the likelihood of IBD which might be the cause of what’s going on now with me. Odd though that started around 18 months after starting Cosentyx though. My present gut symptoms include a lot of pain plus chaotic bowel habits. But they come and go. However both the inflammation poo test plus the FIT test are very positive hence the colonoscopy on Friday. And of course the positive FIT test has everyone running around screaming cancer (but usually not with the very positive inflammation result apparently) so it’s been a worrying time. One thing I know for sure now in prepping for the colonoscopy is that my gut prefers me to eat lots fibre and is having an increasingly hard time dealing with the fact that presently I’m not permitted to eat any fibre at all. So roll on Friday in every respect.

I think the tricky thing at the moment for me is that I have inflammation in so many systems, that it’s is pretty easy for me to fit the criteria for almost any autoimmune disease - I do technically fit Behcets as well, though I think all the criteria can be explained by Crohn’s and PsA in my case, but I will indeed mention it to my rheumatologist (and cardiologist- though not sure what they will make of it - I’m in the making appointments phase but they seem more like the plumber than the specialist diagnostician :joy:)

Oh that’s right - yes I remember having that thought about the Humira similar as well - that it seemed odd it was causing so many gastrointestinal symptoms. But they really do not understand how parts of this works - for example they know MS is caused by inflammation but rarely TNF alpha blockers actually trigger it, so they don’t use them in high-risk situations often.

It really must be a worrying time for you. They jumped to colon cancer first for me too and it was a bit of a shock, though that was pretty quickly ruled out. Certainly if the poo inflammation test is high, the chances do become high for IBD. Me and my sagas probably make it seem worse than it’s likely to be too! I did have it for nearly 20 years, and barely noticed (remission and / or mild symptoms most of the time). Since all this other stuff started I am considered a very severe / unusual case with all the extra stuff. I know what you mean about lack of fibre. I hate that pre-colonoscopy low fibre diet too. I was on it for months earlier this year! :cry:

Roll on Friday indeed. Recover well and let us know how you go