Has anyone dealt with the disease mostly being in your chest? Before my diagnosis I had a bout of pericarditis. Since my diagnosis I’ve been struggling near constantly with costochondritis and now recently I was diagnosed with pleuritis and well. I feel like I haven’t been able to breath for year without a stabbing, tearing pain somewhere in my chest or ribs.
I started Cimzia about 3 months ago and I don’t feel any differently than I did just taking my NSAID. Since my first injection I’ve had a fill in rheumatologist while mine has been at conferences. She just kind of nods at me sympathetically but doesn’t really say anything. I can’t wait until my doctor is back so I can ask her if this is just my new normal. I’m still very newly diagnosed and I have no idea what to expect. Is this my life now? Every day?
But anyway, chest pain? I spend hours and hours each day with heating pads on my chest/back/ribs on my left side. I take lots of warm baths with Epsom salts, and I take an NSAID. Has anyone else been able to find any relief? Some days I feel like I’m at my wits end.
Oh! One more: is anyone else especially clumsy? I live in a 3 story townhouse but we’re looking into moving. I’ve been having issues with my hips and knees locking up and I’ve had a few tumbles down the stairs. Normal? Or am I just clumsy?
I’ve had low level costocondritis for quite some time. Low enough that I can more or less ignore it. But in January I developed chest pain and shortness off breath. It wound up being pericarditis and I’m still dealing with it. It’s much better, but I’m still on colchicine for it and I’m finishing another round of steroids.
I’m sorry you’re dealing with all this. Who is treating you for this? They’re treating it as part of the big picture?
My GP treated the pericarditis with a few rounds of prednisone and an NSAID which would have been early last year. I dont even know for sure that’s what it was honestly, that’s just what she said it was based on a chest xray and my description of the pain. The steroid helped so much but the pain would come and go once I came of of it. I think now maybe it was the PsA.
Then I was diagnosed with the PsA in Novemer of 2017 and soon after I went to the hospital with terrible chest pain (mid-December)I was referred to a cardiologist who declared my heart perfectly healthy and told it was costochondritis and panic attacks. Rheumy told me how common that was but told me the Indomethacin and Cimzia should be knocking it out. Not so much apparently.
Since February I’ve been seeing the fill in rheumatologist who just tells me my regular Doctor will discuss everything with me when she’s back in May. But in the mean time I developed shortness of breath, a dry cough that wouldn’t go away, and a stabbing/tearing pain everytime I breathed, coughed, yawned, ect. Couldn’t get in my my GP so went to an urgent care, my sp02 was low. We did a nebulizer, she gave me a cough suppressant, an inhaler, and a zpack and told me to follow up with the rheumy because she “thinks I might be in a flare.”
And now here we are. I miss my regular rheumatologist. I’m going to have some words about this fill in who just gives me my injection but won’t talk to me. I don’t know if I’m still in a gap, this is normal, or if the Cimzia isn’t working for me.
Hmmm, well certainly that’s not a fun story . Did critical care do enough tests to exclude some sort of lung infection? I know that on biologics that’s the thing my Rheumy is always super-careful about. If you are not sure, get this double checked with your PCP.
It annoys me when things like that get dismissed as panic attacks with a bit of PsA on the side. I had a panic attack in response to lower than usual SPO2 and a high fever when I had the flu, and the docs in critical care acted as though the panic attack was something totally separate . Gee, I wonder if it was just my body and brain response to not enough oxygen and a 39.4deg C temp? Never had one before, nor since.
If it looks like there’s no infection and it’s as a result of the PsA, then maybe discuss another steroid taper with your PCP till you can get back to the Rheumy? The Cimzia really should be having a significant positive effect by now, if it’s going to, so if I were in your situation, I’d want to be looking at a medication change next Rheumy visit if at all possible.
I really hope you get back to feeling a little better soon, that is such a long time to feel like you can’t breathe, and all the things that go with low SPO2 as well.
Wow, you going through it like me, but my chest issues are different, I have inflammation on my ribs it sometimes feel like pneumonia like someone beat up on my torso, I found out I have a L1 to L5 herniated disc along with every day chronic pain. I pray it help, it’s not easy, I feel like a prisoner trapped in someone else’s body, I understand keep your head up you are not alone.
Had clumsy tumble issues in the last years resulting in fractures of various bones, last my hip bone the other day. Am thinking of solutions to create less hindrance
Amongst possible solutions living quarters at either ground floor or a first floor with elevator if in town, support from shoes or boots and no excessive clutter when possible on the ground.
. Did critical care do enough tests to exclude some sort of lung infection? I know that on biologics that’s the thing my Rheumy is always super-careful about. If you are not sure, get this double checked with your PCP.
. Gee, I wonder if it was just my body and brain response to not enough oxygen and a 39.4deg C temp? Never had one before, nor since.