Hope you get an answer soon - let us know how it goes.
Thanks @Keith, yes I am seeing a cardiologist and I have confirmed myocarditis. I was relieved to hear very high levels of fatigue can be normal with it, I was advised to go home and rest rather than battling with it. I must admit that after so long of chronic disease, I am not entirely sure how to do this!!
@Frances thanks for your follow up! The update is that unfortunately I still had some raised cardiac enzymes after the last episode of breathlessness and chest pain just a couple of weeks ago, so the cardiologist is now treating it as though it may be an ongoing inflammatory process.
I have to undergo yet another echo and holter to check function again since it seems it is still active, and the cardiologist is referring me to the super-specialists in my state and talking about biopsy. Yikes!
The Remicade is working, though not yet well enough for my liking, my arthritis is not great fun at the moment. Im having a steroid injection into my wrist for carpal tunnel Monday, hopefully that gives me a week or two of relief. I talked to the gastro who explained that because I’m going on Remsina, there is not a good argument to increase the Remicade, as that is usually done because trough concentrations are too low, which is not a problem with Remsima. He mentioned I might be able to add some low-dose pred, but to get any biopsy out of the way first.
Finally, I see my IgG and IgM are below normal, so I’m not real sure about adding more immunosuppression with Omicron running around.
Once I hear from the super-specialists (which can be a slow process as it depends how they triage you), I’ll update again, but it does certainly seem possible I’ve got a rare form of heart inflammation from my autoimmune disease (they think Crohn’s is the driving force for this).
Hey @Jen75, do you know or have you looked into wearing an Apple watch that has some sort of heart monitoring capability? Sorry if it is a stupid question…I know of a few that are making good use of the latest Apple watch and its ECG abilities. I’m not too bright on these things but just thought it might be a way that you or others struggling with heart concerns could self monitor.
Thanks @Amos - yes I went and got a Garmin Vivosmart 4 (not quite as flash as the apple but cheaper and smaller), as well as a lawnmower man!
Last time I saw her the cardiologist outlawed all exercise, regardless of if I kept my heart rate down, so unfortunately it’s more of an expensive watch now 
, but it does have limited ability to measure my oxygen and I do find it useful to understand my heart rate and spO2 variation when I get symptoms.
It seems like you’re achingly slowly getting to some sort of better understanding from your docs on all this. In the meantime I just wanted to send you some more hugs. 
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I have a prototype watch as part of an amyloidosis study(I think its a Sumsung product) In any event my cardio gets regular reports from it and I get regular nastygrams from him for not taking my Beta Blocker when I get an alert for a-fib. There are many forms of Amyloidosis (which is rare to begin with) but there is one called AA Amyloidosis directly related to PsA and of all things a genetic link with Sephardic Jews. This whole thing just gets wierder and wierder. Now how my cardio got interested in Amy is anyones guess. He did his Residency at Barnes Jewish Hospital but is very much and Indian from India… (he collects Scotch Whisky, belongs to the Whisky tasters club (as do I) and loves fly fishing which is why he is here>
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Last update from me on the myocarditis topic! Saw the super-specialist yesterday, and she was quite convinced to myocarditis is a part of my autoimmune disease spectrum. It is most strongly associated with Crohn’s, so hopefully none of you wonderful PsA folk will have to worry about it.
The good news, is because she is so sure, there will be no biopsy at this stage. Whew!
Then comes the double-edged sword; given no raised inflammation markers and a good response to Remicade, she thinks it is no longer active (yay). Since I’m still having symptoms (including fluid gain/loss) that means what I now have is (mild?) heart failure 
.
We will do a follow up MRI in 4 months once this COVID wave has settled to be sure, but I had been kind of dreading this.
As well as not being allowed salt, I can no longer even drink as much water as I want. Wha??!!?
More importantly, I’ve had three different medical professionals ask me what am I going to do for work now in the last week.
And this cardiologist was also really on the ball when I gave her my history of biologics - her question: So what is the plan for when Remicade fails?
Lots to think about.
Ouch but actually a really good question frankly. And by the looks of it more for Crohn’s issues than PsA, since the myocarditis is more associated with that, so to me it follows you need your Crohn’s super quelled in an effort to keep this myocarditis inactive.
I’m guessing with less water (so with you on that one) and no salt (I’m Irish so that doesn’t make much sense to me!) you might find the symptoms of fluid gain/loss might settle down a lot.
One question I’d be asking is how do you reverse the ‘mild heart failure’? And can you?
More massive hugs Jen. What a crazy rollercoaster you’re on - it must be exhausting and overwhelming. xx
Thanks Poo, yes quite a lot overwhelming, lots to learn!
I suspect the distinction between myocarditis symptoms and heart failure symptoms is when they don’t go away so the docs think it’s permanent. But I’ll find out all the “right” things and do my best. And I realised the heart flare was followed the next day by a mouth flare (too late to tell the new specialist), so I think I’ll be optimistic and hedge my bets - maybe they were linked and it is not permanent 
. As the Remicade keeps improving things, they may go away. In the meantime, it is really the same set of meds, and I’m sure I’ll get over the salt and water.
Thank you all for being here to listen and help me keep my sanity, many hugs back to you Poo, and every one else on the site for the support 
Definitely not great news, but at least the conversation is forward-looking. I’m sorry it’s one more thing added on for you.
Thanks @Stoney. Yes not wonderful, but in a better position back in October when I was trying to put out fires all over my body without knowing what the heck was going on.
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Another follow-up to my myocarditis. After being on Remicade for 4 out of the last 5 months, I feel a lot better heart wise. I had to go off the Remicade for a month, and had two mild heart inflammation episodes (by my category anyway). I seem to have some mild heart failure as they thought, there are some effects that never go away despite feeling like I have little inflammation.
Unfortunately, the follow-up MRI showed some ongoing inflammation, as well as significant damage (infarct) from previous inflammation, and some previous pericardial damage as well. Given the significant response to Remicade, and the fact that I’m pretty much out of biologics without trying to find access to the JAK inhibitors, I guess we might just see if there’s something else we can add. I wonder how many immune suppressants they can put me on at the same time? 
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What are they looking at to add in? Your level of inflammation has certainly has a big party hasn’t it? More hugs xx
Don’t know yet! I’ve seen the report before them due to COVID issues. Probably steroids? Though there is a sneaky little lung lesion that has shown up, so I suspect that will have to be evaluated before doing anything. As you know I’m pretty resistant to long-term steroids, I guess other options might be something like cyclosporine?
Is there a hesitancy or cost restrictions keeping you from trying a JAK inhibitor? I can’t say that I have any side effects from it.
Is there a way that the medical field can tell if PsA is definitely the cause of myocarditis?
In my case there are two hesitancies for the JAKs - first is I have to qualify for them. I’m getting Remicade through the Gastroenterological System currently, I’d have to switch to the rheumatological system to get JAKs. And then we would need to do some creative accounting so the arthritis fit the criteria, but not before spending 6 months in conventional DMARD purgatory before the Australian system lets me go on a biologic. So I’d have to be on steroids during that time to try to avoid the whole dying thing.
Second, the Remicade is working an enormous amount. If this was arthritis, we’d just leave it alone. It’s only that damage to the heart is so permanent and limiting that I’d like it to be working 100%. I have only Remicade and the JAKs left, and am only 46, so it makes more sense to stay on the Remicade as long as I can, because it’s common that if you go off it, you can get loss of response trying to switch back to it (so I “lose” another drug option prematurely).
And then of course, the JAKs might not work at all, and there is a lot of risk in that. Those MRIs have shown a lot of damage, it seems I’m lucky to still have such good function, and only minor heart failure. So I must admit I do find the whole switching drugs situation pretty anxiety inducing.
Unfortunately, the way to get a better handle on what is causing it is to biopsy the heart. That’s often not successful (they don’t get an inflamed bit), and complications range from 1-5% and obviously it’s not a place you want an infection. Though if for example this lung lesion turns out to be sarcoidosis, then we’d be 90% sure because statistically heart inflammation is much more common in sarcoidosis than PSA, Crohn’s, Vasculitis, or myeloma, all of which do seem to have a rare association.
PsA as I understand it, is more associated with pericarditis, as Stoney had/has.
For me, I’m so “unusual” I’m not entirely sure if it is useful information. I am such a bucketful of autoimmune diseases, all of which are just symptoms of my malfunctioning immune system, which can’t really be separated out, I don’t think it would give useful information on how to treat anyway. As an example, because I’m starting to really research, I’m pretty sure I can see the TNF blocker working in my bloods, but still inflammatory markers - so my CRP is normal, but my ESR, albumin, and platelets are not, and I’m guessing that is primarily caused by IL6. If I was a mouse, I’d give myself Remicade and Actemra at the same time. Probably a good thing I’m not a mouse
But they really are so complexly interlinked. The beauty of most of the biologics is that they only block one tiny step in the cascade - this is often enough to reduce the cascade so it’s less harmful autoimmune wise, but the human immune system has so many redundancies in it, we can still fight off infection. My problem seems to be that I have lots of those cascades triggered independently of each other. So you can shut down the TNF and things will get better, but there will still be a lot of inflammation happening with IL6, IL17 etc.
Thanks for the good information. I’m really only starting top get a handle on the systemic nature of PsA and that it can effect much more than just joint issues. I did get an extensive eye exam today and thankful that I have no signs of uveitis. But I suspect that with all other sudden flares that go off and disappear as fast as they came, it could be the PsA causing “bursts” of inflammation discomfort in my eyes but not the damaging sort. The learning curve is daunting to me. I think I will just identify as “healed” and move on.