Do I Have GPA? Most Likely.
Hey everyone,
Just wanted to give you a quick update on what's been going on with me. It's been a rollercoaster ride for the past 16 months, but we might finally be getting closer to a diagnosis. It all started in winter 2020 when I suddenly had this annoying post-nasal drip, congestion, and cough that just wouldn't go away. The timing couldn't have been worse with COVID wreaking havoc in the medical field, so it took me a whole year to go through the usual doctor visits.
First, I saw an allergist who didn't find anything significant. Then, an ENT discovered a deviated septum, a bone spur, and the joy of nosebleeds twice a day. So, I had a septoplasty in November, and for a brief moment, things seemed to be looking up. But guess what? Just two weeks later, out of nowhere, I developed this persistent cough and chest/upper abdominal pain that sent me to the ER during Christmas break.
The ER visit ruled out COVID, flu, blood clots, infections, pneumonia, you name it. However, they did find a calcified granuloma in my right lung and some calcified subcarinal lymph nodes on a chest CT scan. They were all like, "No big deal, dude!" But the ER doc did mention that my lab results were a bit wonky, so I should follow up with my primary care physician.
As time went on, my chest pain and cough turned into shortness of breath, extreme fatigue, and I lost 25 pounds in just 5 months. I had more lab tests than I can count, and they revealed a normochromic, normocytic anemia of chronic disease. So, off I went to see a hematologist who confirmed the moderate anemia and noticed some other irregularities in my blood work.
To make matters more complicated, they decided to do a bone marrow biopsy (still waiting on those results from two weeks ago). While I'm waiting, my hematologist suggests I also see a rheumatologist. And let me tell you, this rheumatologist wasted no time in getting straight to the point. She took one look at me and said, "What's wrong with your nose?"
I mean, seriously, I'm no heartthrob, but come on, lady! Turns out, she wasn't talking about the crook in my nose from that soccer injury 15-20 years ago. She was referring to the dip in the middle of the bridge. We dug up some old photos, and lo and behold, it seems I've been developing something called saddle nose since at least September, way before my septoplasty surgery. And based on the more recent pictures, it's been getting worse.
So, to cut a long story short, the rheumatologist suspects I might have Granulomatosis with Polyangiitis (GPA), and honestly, I can't argue with her. We're waiting on the results of the ANCA test, which should be back any day now. I'm also scheduled for sinus and lung CT scans to get a closer look at the sinuses after the surgery and check out what's going on in my lungs, which have been causing me the most trouble.
Oh, and let's not forget the kidney markers. I had a whole bunch of tests done last week, including a urinalysis. The results should shed some light on that front too. I'll be back in the rheumatologist's office this week to discuss all the results.
Honestly, part of me hopes it's not GPA, but at this point, I just need to figure out what's going on, no matter how "bad" the answer might be. I'll keep you all posted. Thanks for listening.
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Updated:
Hey folks,
Got some news to share, and it's a mix of good and bad. Here goes:
The good news is that I don't have Granulomatosis with Polyangiitis (GPA). Please know that I say this with genuine kindness and empathy, understanding that many of you here are battling with GPA and its challenging consequences.
Now for the bad news: We found out that I have Relapsing Polychondritis. It's like GPA's distant cousin, once removed. Not exactly the news I was hoping for, but hey, at least we're making progress in understanding what's going on.
I've been on Prednisone for about a month now, and it's been a love/hate relationship with those little devil's tictacs. Isn't it ironic that the very thing that helps alleviate the symptoms can't be taken long-term? Anyway, to kickstart the process of tapering off corticosteroids, we're introducing Methotrexate into the mix. At the moment, I'm on a steady dose of 20mg/day of Prednisone to keep the symptoms under control. We tried reducing it to 15mg and 10mg, but the costochondritis came right back each time. The saddle nose and ear inflammation are still hanging around. I have a pulmonary appointment coming up on Friday to assess the extent of damage to my trachea. Fingers crossed it's not too severe.
So, yeah, it's a bittersweet revelation. On one hand, I'm relieved that it's not GPA, but on the other hand, discovering its long lost cousin once removed isn't exactly a cause for celebration.
I'll keep you all updated on how things progress. Thanks for being here and lending an ear.