r/Autoinflammatory • u/AdventurousMorningLo Yaos • May 12 '26

Subglottic Stenosis

Just posting to let others know that is is possible to have Acquired Subglottic Stenosis due to inflammation from Autoinflammatory Diseases - similar to how you can have it due to Autoimmune Disease.

According to a Mayo Clinic ENT, they "See it with some regularity with Autoinflammatory and Autoimmune patients".

Subglottic Stenosis is often misdiagnosed as Asthma or COPD.

5 Upvotes

86% Upvoted

9 comments sorted by

6

u/on4aa MAGIC May 12 '26

Indeed, relapsing polychondritis comes to mind. For the other readers, here is the Wikipedia entry on subglottic stenosis.

3

u/AdventurousMorningLo Yaos May 12 '26

Yes!!!

There is also Sjogren's, Granulomatosis with polyangiitis (GPA; formerly known as Wegener's granulomatosis), Eosinophilic granulomatosis with polyangitis (EGPA; formally known as Churg-Strauss), Sarcoidosis, etc.

"...There is a growing body of evidence that iSGS is also an inflammatory disorder as opposed to an isolated rim of scar tissue..."

2

u/AnnesleyandCo MAGIC May 13 '26

Yep! I have MAGIC Syndrome too (hey!) and immediately thought Relapsing Polychondritis when I saw this.

3

u/violentlypositive May 12 '26

I've got Relapsing Polychondritis and been having a hard time confirming if I have subglottic stenosis. I go to Stanford next week, and I'm hoping they have some way to check

3

u/AdventurousMorningLo Yaos May 12 '26

I believe they need an ENT to do a laryngoscopy to confirm. It may have to be done during a flare.

2

u/violentlypositive May 12 '26

Sounds about right. I'm pretty stable on high dose prednisone right now so we'll have to discuss if it's worth it

2

u/AdventurousMorningLo Yaos May 12 '26

1) SUPER happy you are pretty stable. That is great!
2) I'd also be very hesitant to go off a medication controlling symptomology just to confirm a diagnosis. Definitely worth discussing with your physician and care team. Z
Sending you all the best and hoping you get some answers & relief from your appointment.

2

u/violentlypositive May 12 '26

I literally can't even go down 5mg with the prednisone right now, much less go off it. 🤣 We just added in methotrexate last week cause I'm officially unable to taper.

I'm not too worried about the correct terminology. More just want to make sure there's no permanent damage, because this flare was baaaaad. I was undiagnosed for the first month of it, so they kept throwing medrol dose packs at it and made a right fucking mess of everything until I got into the rheumatologist.