Myocarditis?

Symptoms & Treatments
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@Jen75 it’s objectively fascinating reading what you said in reply to @Amos but it must be terrifying for you in equal measure. So just lots more hugs

Using an anti-TFNa on me appears to do very little for my PsA disease activity, but using one that merely titivates IL17a seems magical frankly but for the Crohn’s stuff. However now azathioprine within a month or so has taken away all bowel pain and discomfort and made all my loo experiences perfectly normal again. And hopefully that will bolster Cosentyx anyway if required. So for now I’m happily back in a win win position. So certainly my bowels love the bigger all over whack aza gives but my PsA prefers tiddly IL17a manipulated only!

It’s like riding a manic seesaw, however for you I think you’re riding that roundabout in the fairground that spins one way but the cup you’re sitting on is a sphere turning everywhich way at the same time. It must also be emotional exhausting @Jen75 xx

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Thatnks @Amos and @Poo_therapy for riding the rather nasty spinning fair ride with me!

@Amos, I must admit thats pretty much where I got to with my eyes as well - just grateful the effects of that inflammation were transient. I sill get them checked every time I get a decent flare though, I know all too well something that seems to cause no permanent impacts can occasionally change character, and eyes are delicate little things!

@Poo_therapy i am so glad you’ve got to a good combination for your PsA and Crohn’s, it certainly provides extra complexity dealing with more than one! I went to a support group the other day and happily I was definitely the weird one - the pretty consistent story was that people find a med and that lasts for a very long time without any unusual additions like I’ve experienced, so here’s hoping for that for you too xx

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103

Hey, I can get all sorts of sympathy from people close to me in my life who feel bad when I limp and hobble, but really no empathy. It’s only here that I’m in touch with people that “get it”. Most would think I’m bonkers if I tried to explain, “I have arthritis in my eyes”. Or, who would believe "heart arthritis "?? RA is far more understandable. In our world, clarity of language is essential and PsA just doesn’t tell people much. The “psoriatic” part isn’t even on my mind as the meds have all but eliminated all psoriasis but it is the first word used in our disease. My rheumy uses “systemic autoimmune inflammatory disease” more often in his vocabulary. But I do get a few chuckles when I complain that my “arse-ritus” is acting up from sitting too long, one day at a time @Jen75!

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104

Yeah, it is such an inept description. I used to tell people I had an autoimmune disease that attacks my ‘insert whatever was going wrong that week here’.

Now I tell people my entire immune system is malfunctioning and my body is just a bucket of autoimmune diseases :joy:

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105

Yes! Explaining that arthritis is why I developed cataracts so early, among other things, is a bit challenging. People definitely get stuck on arthritis? Oh yeah, I have arthritis in my left knee.

Explaining how it has affected things outside of my joints is always interesting, and you’re body has definitely decided to focus a lot of its attention on those extra articular attacks.

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106

Just this week in the UK, NICE which decides the protocols on how to treat medical issues and indeed funds the cost of any meds associated with that issue announced that opiates should no longer be used to treat osteoarthritis as frankly they didn’t work for the patient and basically screwed them up consequently as they kept reaching for more and more of them, given they didn’t work for them. A situation not unfamilar to anyone living in the USA or indeed across ‘the pond’ dealing with societal issues as regards Fentanyl abuse and addiction. They said that in fact exercising more would help.

So varying charities got on the bandwagon and one called ‘Arthritis Action’ proceeded to indulge itself on breakfast TV programmes saying how great it was but totally forgetting to distinguish the different types of ‘arthritis’ like ours and indeed any other autoimmune inflammatory arthritis. So as you can imagine UK inflammatory arthritis groups naturally got up in arms. Rightly so.

I try never to say I’ve got an ‘arthritis’ a bit like @Jen75 I start off calling it an ‘autoimmune condition’ and thankfully given Covid and the ‘protection of people with autoimmune conditions’ that’s now all a lot more more comprehensible to most people. However I do consider the term PsA is pretty poor one as like you say people don’t get ‘arthritis in your eyes’ do they? I think we have a spondyloarthritic systemic autoimmune inflammatory disease really. But I think the using the word ‘arthritis’ has been an incredibly disadvantage for most of us in trying to explain things to the people around us.

More so now when most people in the UK now think all we have to do is exercise more - sigh… Most of us would love to that if actually we could. :roll_eyes:

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107

Oh yes, I’ll head to the gym and do an aerobic eye workout. In fact, I can exercise my aching toe joints at the same time!

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108

Ugh, toes. I may actually need to try physical therapy for my feet. I’m trying to do some stuff at home, but half the exercises are too painful.

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109

I think think this is still on topic…as a layman at PsA rather than a professional holder of the title, articles like this are daunting. But the conclusion itself at the end is encouraging that the systemic nature of PsA is being realized and our general practitioners need to be up on monitoring us well.
If you have time, please glance at the article and let me know if it is a reliable source of information, thanks! The Risk of Systemic Diseases in Those with Psoriasis and Psoriatic Arthritis: From Mechanisms to Clinic - PMC

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I think it’s a credible article, much of what it says is pretty much known by specialists in PsA less so in my view by specialists in psoriasis but that could be because I haven’t suffered psoriasis for 30 years. But from what I see from others being treated by dermatologists in the UK those dermatologists are lagging behind in keeping up. And much of this doesn’t hit the brains of general rheumys who just want to treat RA either, nor the ones who unilaterally say all damage is simply OA either. Or that all symptoms are fibro. We’ve still a long way to go to educate most of our so called specialists in PsA and psoriasis sadly. Hence the need to always get ourselves before the consultants whose life’s work has been all about PsA and/or psoriasis.

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111

Sorry for the novel, but thought I would update in case in years time somebody else is searching for Myocarditis- thought I would keep all the info on the same thread.

Well in May, I had a couple massive flares (one was a dead ringer for a heart attack - and given a heart attack is a lack of oxygen to the heart and cell death, I’m guessing was a heart attack). This happened the night that I started cardiac rehab because I’d been cleared by my public-system cardiologist to go ahead with it. This was while on infliximab, and the gastro was worried the infliximab might be making things worse (it can rarely cause heart failure - they don’t know how).

So I got taken off infliximab and put on 25mg steroids. Went back to my own cardiologist as it was pretty clear we did not have a handle on things, and this theory that everything would be fine once the infliximab sorted out my Crohn’s did not appear to be working.

She did some tests and put me in hospital, here I negotiated to increase the prednisone to 60mg daily and got out. A couple of weeks later, feeling generally unwell and thinking I had pneumonia again, I did some inflammation blood tests which included the enzymes in my heart. Back in hospital, 4 days this time till they decided I was stable enough to go.

Did another echo and now there is damage, fluid, swelling visible on echo too. Seems like the prednisone is next to useless, so gastro gets emergency consult with immunologist, who notes that all my diseases are autoinflammatory, not autoimmune, says we need to get back on a biologic asap, and if infliximab isn’t doing the job we should move to Anakinra (an IL-1 blocker).

Back on infliximab, but after about 4 weeks the echo and heart enzymes are still the same, so we decide to talk to the gastro about Anakinra. Also after a bit of reading, I ask my cardiologist to add colchicine (they have just recently discovered it has an affect on IL-1 which is why it works for Familial Mediterranean Fever). I have a great three weeks after this, resting heart rate trending down, shortness of breath reducing and energy increasing, and I am thinking the colchicine is working, but then I get pneumonia, and this triggers off a big heart flare (can’t sleep lying flat, pain every night needing opiates to sleep), and the big nasty hives rash is back. Bloods look pretty atrocious, including what looks like an unhappy liver due to congestion.

So, this morning is my second daily shot of Anakinra. All good so far (though the first one stung more than I expected). No miracles yet, but the rash which was bubbling along appears to be subsiding, and I lost half a kilo in water weight (which is a very good thing if you have heart failure), so it is looking promising!

I have definitely entered Guinea pig territory- There is a phase II trial currently running on Anakinra for myocarditis. I suspect we’ll know before their results are published. Cross your fingers (figuratively, not literally) for me!

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You’ve been through the wringer with this. Fingers and toes crossed that this new med continues to work. You really need a break.

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I can’t imagine how frightening most of this was for you. Massive cyber hugs. And I’m crossing everything for you. xx

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114

Thankyou both @Poo_therapy and @Stoney. Yes, it is pretty anxiety inducing, and with COVID being a virus that causes an immune response in the heart, what happens when I get that is also on the mind (as is “what if this med doesn’t work”, and “what about when it runs out like all the others” ). Anyway, one thing at a time, hopefully this one performs as promised and things are on the way up!

As a bonus, the immunologist tells me it is very good for joints (though might not work for Crohn’s, but that’s the least of my worries at the moment :joy:).

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115

Hi @Jen75 ! I was thinking of you this morning and wondering how you were doing with the new meds?

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Hi @Stoney , thanks for prompting a check-in!

Well, the Anakinra has made a big improvement to my cardiac symptoms (shortness of breath, chest pain etc), and has also significantly improved my echocardiogram, and it seems likely that the inflammation in there has greatly reduced. Unfortunately I still have a high Troponin (so cells are still dying), a pretty high heart rate (so if anything at all happens I am tachycardic), I still retain water if I don’t water-restrict and use diuretics, and I still have a very high NT pro-BNP (heart enzyme that measures heart failure mainly), so it seems I still have heart failure, and it seems likely that will be permanent and progressive. There are lots of things I used to do that I think might be “never again” type things (eg jumping and dressage on horses, remote field work, and last week whistling was added to the list :roll_eyes:), and I must admit at the age of 47 with a 12 year old, I am finding the adjustment pretty hard. It will take time.

Overall, however, it is still a good result as I was (not unreasonably) worried the continual acute attacks were going to have me on the transplant list / dead within a couple of years, and it seems much more likely now that will be some unquantifiable time away. And as the immunologist promised, my joints do seem to be really rather happy on Anakinra.

The Anakinra doesn’t seem to work well for all the inflammation though, or the dose is not enough (I have asked for another increase), because my regional head inflammation is still around at the moment (throat, mouth, cheeks, eye, memory loss etc). I suspect the ideal for me would be both Anakinra and a TNF blocker, and the gastroenterologist agrees, but both the immunologist and rheumatologist are very nervous about two biologics together. I’ll update if I end up on both!

In the meantime, today is the very first return to see my personal trainer for ages, where I do muscle-building but no cardio work, so a bit nervous but optimistic.

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Very mixed update. I was definitely hoping that your heart failure had gone away at this point. I’m glad you’re finding ways to be optimistic, even if only small things.

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118

That’s quite something to be coping with @Jen75. Just more hugs. xx

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119

Hi @Jen75, thanks for the update, you have lots of things that are more than a mere interruption to “regular” life. So much is out of our hands isn’t it? I’m not nearly as medically savvy as most of you so I hope you don’t mind a few questions. 1. How do we know what to attribute to PsA and what might have been there anyway? ie. To what extent is PsA the root cause of heart issues or other non-joint related problems? 2. Looking back on your medical history, is there anything that you would do differently (treatment wise) if you could do it over again? Thanks for considering and hoping you can return to some of the things you love.

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In my case, I have multiple immune dysfunction, not just PsA. It’s really not possible to separate them out at this stage - when I die (or get a transplant), then they may be able to tell from histopathology of my heart which part of my immune dysfunction most likely caused it.

What I am very confident about, is that it was totally caused by my immune system wreaking havoc in my heart. Before these fairly sudden events, I was at a healthy weight, ate pretty well, had a resting heart rate in the mid-high 50’s, and even with all my other limitations, had enough cardiovascular fitness to go on a 6 hour trail ride including quite a bit of trotting and cantering. Recently they’ve confirmed my arteries are as clean as a whistle.

What would I do differently? Hmmm, look this is so unusual that I can’t even find case studies online similar (they are writing me up at the moment), so I really hope no other members ever encounter any thing like this, but as a result, we were literally shooting in the dark. Probably I should have made more noise when I felt like I was falling between the gaps of a disinterested Rheumy and a disinterested cardiologist, but I’m honestly not seeing a different outcome.

For example, much of the permanent damage was done when we stopped the Remicade and started the steroids. There is really no record of people not responding to steroids in the case of an immune-driven myocarditis process, unless they are so acute they are in intensive care (usually giant cell myocarditis - and then they die), so I don’t think any of us had seriously considered things getting WORSE on 60mg a day. That really threw all of us. Perhaps getting the immunologist involved earlier…. But then earlier there were no abnormalities on echo, and so I suspect it would not have been treated with the same seriousness (immunologist waitlists where I am are 6 months standard - they got me in just over a week).

So though there might be slightly different thing here or there, I don’t think that with the information we had, we could have made much different decisions. If I go allllll the way back, probably would have been better if my dad didn’t start me spraying the roses weekly at age 9 with carbaryl, definitely would have been better if I’d never smoked or drank, and possibly living life like every day was my last (all adventure, no meditation) for 20 years, wasn’t the wisest thing to do with a body prone to autoimmune disease. But again, these are things I know now, not things that were apparent then.

I can say I don’t have my daughter using pesticides and cleaning products :joy: and there is a fair bit of emphasis on having a balance of downtime with workload/excitement in our house!