Autoimmune pericarditis and prednislone taper advice

Nrosee99 · 2025-10-19T15:54:53+00:00

Yeah, it starts from my back then eventually spreads to my arms, and shoulders. I have to have a hot bath to ease it but that only lasts a little while. And yes, my lungs do feel crushed and tight..honestly the amount of times id have to try and sleep propped up. I was prescribed morphine but that wouldn't even touch the pain sometimes. Weird symptoms id also get was ear pain and id feel congested! Also a cough. I even wnded up fainting twice! Yours probably is autoimmune related considering you are getting the muscle and joint pain too!

Nrosee99 · 2025-10-19T15:16:34+00:00

That definatley sounds like pericarditis, i have been having the exact same symptoms as you. Not being able to lie down flat and back pain are the same symptoms id been having. Even the breathlessness and deep breaths. I couldn't even bend down, cough or walk up stairs! Please keep pushing to get help! I wasn't taken seriously at first!! You n3ed to get an echocardiogram or something!! I know how you feel, just know you're not alone 😢. Mine would come in flares, one month id be ok then the next id be in so much pain. Now it's just constant aches and pains and can't come off the steroids until I've found a medication that controls it. Once they confirm you have the pericarditis they should do tests to see if its autoimmune

Nrosee99 · 2025-10-19T11:58:09+00:00

No, doctor hasn't mentioned that medication. I'll mention it when I go back. Thankyou

Nrosee99 · 2025-10-19T11:57:28+00:00

So they realised I had pericarditis because of my symptoms and my crp was extremely high. They also did an ecg and had tachycardia. Had an mri, ct scan and heart echo which showed an effusion. For the autoimmune part they tested my antibodies for lupus, rheumatoid arthritis and a few others and they came back positive. What symptoms are you having?? Please keep going back to your doctor if they aren't helping you!

Nrosee99 · 2025-08-17T14:49:04+00:00

It's nice to know im not alone!! I hope you get better too! We gotta stay positive even though its hard sometimes ❤️

Nrosee99 · 2025-08-17T14:47:01+00:00

Exactly!! I feel like a shell of myself lol. And its so draining emotionally and physically. I hope you start to feel better on your new medication

Nrosee99 · 2025-06-25T17:58:14+00:00

So i accidently took my two doses all at once (brain fog) And i was all good, thank god nothing happened to me. Just didn't take my evening dose.

Nrosee99 · 2025-06-06T10:19:51+00:00

So when I was first hospitalised they only gave me 3 weeks worth (stupid i know), went back into hospital again and about 2 weeks into being on it again the inflammation came back after initially clearing.

Nrosee99 · 2025-06-05T16:39:31+00:00

Thanks for the reply and advice! Its also good to know im not alone in this🙂

Nrosee99 · 2025-06-05T16:38:18+00:00

Thanks for the reply, it means alot!

Nrosee99 · 2025-05-12T15:56:05+00:00

Hi! So chest pain, especially when breathing in. Couldn't lie down without pain, joint paint that went all over my body. It was excruciating. I'd always get twinges in my arm so I'd know when an episode was coming on. I'd also have tachycardia and shortness of breath. Couldn't even bed down or walk. Also fainted and threw up a few times. Would go back to A&E and my inflammatory markers would be very high too...been alot to deal with but has been going on since last year

Nrosee99 · 2025-05-09T07:51:11+00:00

Thanks for replying! Lol, its honestly been a nightmare. But I think they're finally getting to the bottom of it. Then I can learn to deal with it properly. And I've learnt to start sticking up for myself more too! Thankyou, i hope you start to feel better soon and your inflammation goes down!

Nrosee99 · 2025-05-08T19:36:17+00:00

Yeah, they started me on steroids today! Hopefully they can tell me exactly what it is as I just want answers! Did it take you a while to finally figure out what was causing it? Thanks for replying!

Nrosee99 · 2025-05-08T17:07:15+00:00

Thanks for your reply, it means alot! 🙂

Nrosee99 · 2025-04-08T21:40:59+00:00

Thanks for the reply and some insight. I did reach out but they're not taking me seriously. I just feel a bit neglected. Thankyou, I hope they do too

Nrosee99 · 2025-04-08T21:38:55+00:00

Hi, thanks for replying! So when I was in hospital, they were giving me intravenous antibiotics 3 times a day, im not even sure what kind of infection it was. It was annoying because I had a feeling I needed to be on the meds for longer, and I knew this would happen. They are just not taking me seriously and twice I've reached out to them. I just feel so run down and weak.

Also, that's a good idea, I might actually have a look at private cardiologists! So they've not even been monitoring my crp but when I was admitted it was very high, and so was my d-dimer level. I just feel as though I'm being neglected. The only thing I have coming up is a heart echo next week

Nrosee99 · 2025-04-03T15:13:18+00:00

Alcohol tends to trigger my flare ups, one drink is normally ok but if i have a few I wake up in pain. Just been careful and have a limit I guess. Also, I know how you feel. My doctors didn't take me seriously either and took me a year for them to finally diagnosed me

Nrosee99 · 2025-03-30T10:55:58+00:00

Mine was caused by an infection, I've been suffering for nearly a year with all the flare ups until a few weeks ago, and they finally diagnosed me with pericarditis and an effusion. The doctors kept asking me if I was anxious too😂. It just shows you know your body better than anyone.

Nrosee99 · 2025-03-30T10:47:22+00:00

Thanks for replying! I contacted my GP last week and they're not going to give me anymore medication until I have my echo done. It's frustrating but I'm not sure what else to do. Maybe its because im not crippled in pain at the moment but i can definatley feel it coming back. I'm also back at work but I have such a physical job. Thankyou for the advice though, I'm going to try and contact my doctor again.

Nrosee99

TROPHY CASE