Most Likely Diagnosis is WG/GPA

Hello everyone,

I'm currently waiting on the ANCA results, and have sinus and lung CT's tomorrow, but after 16 months we're as close as we've ever been to a diagnosis. Started in winter of 2020 with post-nasal drip/congestion/cough out of nowhere that wouldn't go away. Thanks to COVID slamming the medical field it took a year to go through the PCM steps, then an allergist with negative results, then an ENT who found a deviated septum and bone spur plus 2x/day nosebleeds which led to a septoplasty last November. Two weeks of feeling good and then an "out of nowhere" cough and chest/upper abdominal pain that led to an ER visit during Christmas break. No COVID, no flu, no blood clots, no infection, no pneumonia, nada. Chest CT at the ER found a calcified granuloma in my right lung, and calcified subcarinal lymph nodes. No big deal right? Oh, and ER doc mentioned my labs were a bit wacky, so follow-up with your PCM. Chest pain and cough quickly builds into shortness of breath, fatigue, lost 25 lbs in 5 months, more and more labs and we're at normochromic, normocytic anemia of chronic disease so off to the Hematologist. My hemoglobin and hematocrit is low, platelets are sorta high, ESR/CRP are high, Ferritin high (but low iron and TSAT), and high Haptoglobin, so definitely a lot of inflammation going on and definitely moderate anemia. More labs and a bone marrow biopsy (still waiting on the results from that pull two weeks ago), but nothing is jumping out yet so Hemo says to hit up the Rheumatologist as well. Rheumatologist immediately asks "what's wrong with your nose?"

I know I'm not People's Sexiest Man Alive, but jeez lady... When I tell her I think I broke it 15-20 years ago playing soccer, she says no, not the crook, the dip in the middle on the bridge. We start looking at old photos, and, well, I guess that's why she's a great Rheumatologist; sure enough, I had been starting to develop saddle nose at least as far back as September (months before the septoplasty surgery), and based on the photos I can find that show a decent profile it's only been getting worse since then.

So, long story short, she suspects GPA and I can't say I disagree with her. We're waiting on the ANCA which should come back any day now, and the CT's to take another look at the sinuses post surgery and the lungs as that's where my main complaint is. Also waiting on kidney markers (did the whole shotgun-blast of tests last week including the urinalysis). I'm back in her office this week to go over the results. While on one hand I sure hope I don't have GPA, I'm at the point where I just need to figure out what the issue is no matter how "bad" the answer may be.

Whelp… good news and bad news.

Good news: I don’t have GPA. I say that in the nicest, most sincere way I can, knowing that almost everyone on this forum struggles with GPA and its consequences.

Bad news: We figured that out by figuring out I have Relapsing Polychondritis.

One month into Prednisone (with a little love/hate of the devil’s tictacs - why is the thing that makes the symptoms go away the same thing that can’t be taken long term…), and we are adding in Methotrexate to try and start the corticosteroid reduction process. Right now it’s a consistent 20mg/day Pred to keep the symptoms at bay; tried 15 and 10 but the costochrondritis came right back each time. Saddle nose and ear inflammation continue. Pulm on Friday to figure out how bad my trachea is messed up.

Delighted I don’t have GPA. Broken discovering I have its long lost cousin once removed…

I know nosebleeds and sometimes saddle-nose are symptoms of GPA.
I did have the nosebleeds, but was lucky enhough not to develope a saddle-nose, for which I was quite scared of in the beginning.

I'm very sorry to hear about the damage to your nose.
Good that you shared your story here.
I never knew that the symptoms of Polychondritis could be so similar to GPA!

I hope you will get the right treatment soon, so that the inflammation will disappear.
Best of luck to you! :smile1: