@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

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

1 Like

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!

1 Like

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:


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.


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:


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!


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.


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

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.


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!

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

1 Like

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

1 Like

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:).

1 Like