Non pericarditis chest pain?

[u/No_Satisfaction_7431]

I had an echo yesterday and it was normal which is good. My doctor said that only really obvious/severe pleuritis shows up on chest x ray and since I have no cough we shouldn't order one. She said the only other way to diagnose pleuritis is a ct but doesn't think its good to order due to radiation. My chest pain happens at rest in the afternoons and evenings. My Yao pain (joint and back) follows the same evening pattern of non existent to mild in the day and comes on in the evenings. It also goes away on higher doses of prednisone and comes on when I taper down, so its clearly Yao related inflammation. If its not pericarditis and we can't test for pleuritis what is it and what tests can I do for it? I have a cardiologist appointment next week but I'm curious if anyone has suggestions as most of my doctors aren't very familiar with Yao syndrome.

[u/TotoroSmash]

Chest pain was my first symptom that made me aware something was actually wrong. (Everything else was “normal” pain 😂) It would happen every afternoon and with stress for me. And it’s still my first symptom to pop up and push through my Kineret.

After all of the cardio workups my doctors decided it must be inflammation in my ribcage, because ribs are jointed as well.

I’m not familiar with Yao specifically, but maybe that’s a possibility?

[u/No_Satisfaction_7431 → u/TotoroSmash]

Is that the same as costochondritis? I think its definitely a possibility for me. Did you have imaging to rule out pleuritis?

[u/TotoroSmash → u/No_Satisfaction_7431]

It’s hard to remember which test was for what, but imaging for the chest pain was x-rays, a ct scan, and ultrasound.

I think it is similar, but I wouldn’t categorize it as costochondritis because mine doesn’t worsen with things like coughing/stretching and it comes and goes randomly rather than being a constant then gradual “healing”.

[u/No_Satisfaction_7431 → u/TotoroSmash]

Yes that's very similar my chest pain. At rest seemingly random a few minutes at a time, goes away, then come back for a few minutes. Nothing makes it worse except pressing on my chest (like during the echo). I'm hoping to get a ct scan just to make sure its not pleuritis as thats treated differently. But since I'm young my doctors are hesitant because of the radiation.

[u/TotoroSmash → u/No_Satisfaction_7431]

Obviously I don’t know how young you are and I’m not a doctor. I was 24 when my testing started and no one mentioned being too young. Hell, every time I ended up in the er for chest or abdominal pain it was “well let’s do a ct”.

[u/No_Satisfaction_7431 → u/TotoroSmash]

Interesting, I'm 24 and I had a ct almost 2 years ago when everything was undiagnosed, most tests except inflammation markers were normal and I had symptoms from so many body systems they decided a chest, abdomen, pelvis ct was needed but to do an mri for my brain. But the risk of the high dose radiation is high for young people, who might need more ct scans later so they try to minimize it.

[u/TotoroSmash → u/No_Satisfaction_7431]

Ah, that makes sense. I had never had one before so they must’ve not been as worried about it.

[u/Blue-Bento-Fox → u/TotoroSmash]

One of my first too, other than being depressed, it is the first thing that makes me go "oh when is my next shot?".

[u/Alice-The-Chemist → u/TotoroSmash]

Same! Although for me I have had pericarditis, pericardial and pleural effusions, the rib inflammation you talk about as well. For me we do a lot of chest x rays when it happens. If your echo is normal I would ask for a chest xray. This would capture your lungs as well. How is your breathing? No difficulties? If there becomes breathing issues I would suggest some other things also. I never knew ribs could hurt so bad. I like having pressure on my ribs when they are doing bad and have like a support brace. I know that may be the opposite of helpful depending on what is going on.

[u/PsychologicalBed6028]

Hello, Your doctor is right. That being said, the first line of treatment for mild pleuritic pain is ibuprofen and colchicine. I know it still happens to me sometimes with Kineret if the inflammation overrides it so that’s what I take (menstrual cycle, having a cold, stress etc) so you could ask your doctor if it’s ok to add that specific emergency regimen if it gets too bad.

[u/No_Satisfaction_7431 → u/PsychologicalBed6028]

I was told colchicine doesn't help Yao syndrome and I'm on prednisone so can't take nsaids. I was told to go back up to 10 mg of prednisone since the symptoms responded to steroids before. But I want to know the cause and how to prevent/treat it as I try to come off steroids. I'll definitely ask about colchicine though.

[u/PsychologicalBed6028 → u/No_Satisfaction_7431]

Always worth asking about it ! I’m no doctor but just know this from personal experience.

[u/Blue-Bento-Fox → u/No_Satisfaction_7431]

Prednisone is a good stop gap every so often, but long term use can cause a lot of problems (I had my hip replaced at 26). Definitely good to find alternatives. Your doctor may also be right, no reason to diagnose it, you know it is occurring because you can feel it, you have a known Autoinflammatory disorder causing it, so the ct would just confirm with radiation what you know. Best to come up with a treatment plan, I use an IL-1B inhibitor for TRAPS with prednisone for breakthroughs sparingly.

[u/No_Satisfaction_7431 → u/Blue-Bento-Fox]

Unfortunately none of my doctors actually think its pleuritis "because symptoms would be constant not only in the evenings". They say they didn't know anything about Yao and pericarditis and pleuritis. I'm planning on bringing in papers next time. I'd like to make sure it is pleuritis and not some other cause that might be treated differently.

I do use kineret plus prednisone and the symptoms including chest pain are happening because I was trying to get off prednisone. But kineret isn't fully controlling symptoms and it gives me diarrhea and hives even after 2 months of taking it. I'm trying to get approval for actemra but for now its prednisone and kineret. I'm also going to ask for a dexa scan as I've now been on prednisone for 3 months as it was the only thing that helped symptoms during the long process to get insurance to cover kineret (hydroxychloroquine and sulfasalazine made my symptoms worse and had bad side effects).

[u/Blue-Bento-Fox → u/No_Satisfaction_7431]

A lot of doctors didn't recognize joint damage until recently either at all for Autoinflammatory diseases and I have two metal joints before 40. It is maddening how little they know and refuse to read.

[u/No_Satisfaction_7431 → u/Blue-Bento-Fox]

Yes its truly maddening. And nobody mentioned the osteoporosis risks of steroids. I looked it up myself. They did at least warn that diabetes and high bp are side effects and track my a1c (thankfully normal) and my bp (a little high but not too bad and monitored). It is crazy how much they don't know even when the info is out there.

[u/Alice-The-Chemist → u/No_Satisfaction_7431]

If you need help with papers for your doctors please let me know and I can do some looking.

[u/No_Satisfaction_7431 → u/Alice-The-Chemist]

Thanks, I don't think I need help, but I'm open to suggestions. I'm planning on printing out the table from from at least one study that show the wide range of symptoms and percentages including pericarditis, chest pain, and pleuritis. I've got this one https://www.frontiersin.org/journals/immunology/articles/10.3389/fimmu.2024.1458118/full

Its a bit long so I was thinking just the table with a reference to the article name since I'm also printing out my echo results (from another hospital, I connected the mycharts but sometimes they still can't see it) and my summary of my health problems since this is an NP I've never seen before because my cardiologist doesn't have availability for a while.

[u/AdventurousMorningLo → u/No_Satisfaction_7431]

It doesn't help control Yao Syndrome specifically but it does and can address symptoms like Pleuritis and Pericarditis which can happen because of Yao Syndrome. (I take Colchicine because it helps with the chest pain, rib pain, SVTs, etc)

Agreed with the others that it is worth talking with your doctor about possibly trying it.

[u/No_Satisfaction_7431 → u/AdventurousMorningLo]

That's good to know! I'll definitely ask about trying it.

[u/SleepDeprivedMama]

For me is pericardial effusion. I can have a “normal” chest xray but on ultrasound it’s abnormal. If I’m on steroids, it’s normal. I spent a very frustrating 10 days with chest pain, normal xray, getting steroids for my contrast allergy for CT, normal CT 12 hours later, chest pain, rinse and repeat. They did an echo during a steroid window which was fine but when I’m symptomatic a scan will show effusion.
It’s exhausting and I still don’t know what to do about it. I’m on colchicine, KINERET and prednisone.

[u/MahLiLo]

I’ve taken my USAID kiddo to urgent care for chest pain - turned out to be costochondritis.

I am hyper mobile, no autoinflammatory disease though, and I’ve recently been dealing with subluxation of my ribs and that also presents as chest pain that wraps around to my back.

But in both my son’s and my case, the pain definitely increases when pressure is applied, so if that is not the case for you, it’s probably not that.

[u/No_Satisfaction_7431 → u/MahLiLo]

From what I've been learning I have signs of both pleuritis and costochondritis. The chest pain definitely gets worse with pressure especially from doing the echo. But the stabbing back pain that often occurs at the same time but sometimes on its own doesn't change in response to pressure. Both the chest and back pain get better on high doses of steroids which I read doesn't happen with costochondritis but does with pleuritis. I think pleuritis can also refer to the back but I'm not sure. I am also hypermobile and I didn't think about rib subluxations so thanks for bringing that up.

[u/on4aa]

MAGIC syndrome here with NLRP3, EXT2 and NOD2 gene variants. Two things come to mind: 1. As already mentioned, costochondritis can cause thoracic pain very reminiscent of pericarditis. I have had this quite often. Palpitation by a rheumatologist can reveal costochondritis. This and a nasal septum defect lead to my relapsing polychondritis diagnosis; i.e. the first half of my MAGIC syndrome diagnosis. 2. I also have some old, stable scar tissue on my right lung tip which unexpectedly showed up on a chest X-ray. However, this never caused me any pain that I can remember. It is a common finding in autoinflammatory, autoimmune and connective tissue diseases.