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u/pawamedic

Image 1 — Relapsing Polychondritis?
Image 2 — Relapsing Polychondritis?
Image 3 — Relapsing Polychondritis?
Image 4 — Relapsing Polychondritis?
Image 5 — Relapsing Polychondritis?
Image 6 — Relapsing Polychondritis?
Image 7 — Relapsing Polychondritis?
Image 8 — Relapsing Polychondritis?
Image 9 — Relapsing Polychondritis?
Image 10 — Relapsing Polychondritis?
Image 11 — Relapsing Polychondritis?
Image 12 — Relapsing Polychondritis?
Image 13 — Relapsing Polychondritis?
Image 14 — Relapsing Polychondritis?
Image 15 — Relapsing Polychondritis?
Image 16 — Relapsing Polychondritis?
Image 17 — Relapsing Polychondritis?
Image 18 — Relapsing Polychondritis?
Image 19 — Relapsing Polychondritis?
▲ 4 r/Autoimmune

Relapsing Polychondritis?

Reposting to be clear- not looking for a diagnosis! I have a very good doctor, just wondering if anyone who has RP has had their ears look similar or different?

I’ll spare my long history but I have a whole bunch of symptoms consistent with autoimmune and RP including unexplained progressive SNHL and fevers and such. Pretty much everything else has been ruled out in the last two years including genetics. Doc wants to discuss RP possibility at next visit.

I’m very frustrated though because at times my ear redness has had a very clear cut off between lobe and cartilage and at times it has included some lobe. Anyone similar?

Has anyone experience nasal chondritis? What did it look like for you?

Just curious of others experiences while I wait to see my doc, feel free to show your own ear photos!

u/pawamedic — 1 day ago
▲ 5 r/Rheumatology

Relapsing Polychondritis?

I’ll spare my long history but I have a whole bunch of symptoms consistent with autoimmune and RP including unexplained progressive SNHL (initially but no longer responsive to prednisone) and fevers, non erosive systemic joint pain, and such. HX of chronic ear and sinus infections both antibiotic resistant. Pretty much everything else has been ruled out in the last two years with imaging and labs including genetics. Doc wants to discuss RP possibility at next visit given new episodic SOB and eye burning (not dry or red) symptoms. Those have only happened like twice though- everything else much more consistent.

I’m very frustrated though because at times my ear redness has had a very clear cut off between lobe and cartilage and at times it has included some lobe. Does this exclude RP?

Also does the nose photo look like nasal chondritis? It was very painful and def not acne my best guess at the time was bacterial infection from migraine cap but never got it checked out. It only just occurred to me it could have been cartilage inflammation.

I do have very severe episodic inner ear pain and pressure which coincides with hearing loss and all other causes ruled out. It’s bilateral, but I have what is assumed to be unrelated congenital deafness of the right ear so I can only speak to the now severe hearing loss of the left.

Happy to provide more history and info if you have thoughts or experience with RP. Thanks!

u/pawamedic — 1 day ago
▲ 10 r/Autoimmune

What helped you stop searching for a diagnosis and accept management as good enough?

I’d ordinarily never tell someone to just accept symptom management without pushing for more investigation- but I’ve seen everyone. I’ve done all the tests, been to all the specialists, had countless imaging. Even did a year of autoimmune treatments that had terrible side effects.

A genetic lab came back promising for an answer but the second round for confirmation basically nullified that option. Genetics was my last resort. We’ve pretty much decided it’s most likely not autoimmune and my low positive ANA and transient inflammatory markers are probably incidental.

So there’s nothing else it seems other than PT and OTC pain meds. I’ve lost almost all my hearing as part of whatever is going on and it’s still declining with no answer. (I was deaf in one ear originally and now have almost no hearing in the other)

All to say- it seems time to accept I won’t get an answer. I just don’t know how because even though some things have improved, I’m terrified of a sudden relapse of the major symptoms with no diagnosis to help advocate for myself. I haven’t worked in 1.5 years and idk how to in any confidence push myself to do so with no idea of what progression looks like.

Any tips help!

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u/pawamedic — 7 days ago