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Hello all! I'm Amy, currently 49, and I'm from just outside of Boston, MA, USA. The TL;DR version is that, after 2 1/2 years of misery, I was finally diagnosed with GPA and started treatment in July. The full version follows.
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At the beginning of June 2020, I went to the ER because I was having an asthma attack. The ER doctor didn't believe it was just asthma and insisted that I was probably having a blood clot. It was a clear case of fat bias, but whatever. He ran a blood test that said I had no clot. So then he ordered a CT scan. He still found no clot, but what he did find was spots in my lungs. He delivered this news with all the grace of a hippo on roller skates, and I was left thinking I had lung cancer. Fortunately I got connected with pulmonology very quickly who reassured me that it was highly unlikely.
After a summer of antibiotics, short-term prednisone, and many tests, including a bronchoscopy and a fine-needle biopsy, my medical team were certain it wasn't cancer, but still weren't able to diagnose me with anything. They even dismissed vasculitis as a possibility because I've always been ANCA negative and I didn't have enough of the standard symptoms. So at the end of September, I had a wedge resection of my right lung and the biopsy still revealed nothing. They even sent the findings to the Mayo Clinic for a second opinion, but that didn't produce any answers. So I was put on long-term high-dose Prednisone and entered the monitoring phase.
Over the course of the next two years, I had several CT scans and lots of telehealth check-ins with my pulmonologist, but not much else. He tried tapering me off Prednisone in Fall 2021, but I flared and had to go back on high dose for a few months. I did see a rheumatologist at one point, but she only diagnosed me with fibromyalgia and didn't do any kind of investigating. Overall, my lung infiltrates weren't getting worse, but also weren't getting better. They'd shrink a bit with the high-dose Prednisone, but once I was back down to ~10mg, they'd flare again.
Through all this, I was fortunate that I was still able to work from home due to the pandemic, but the truth was that I was barely able to do more than 10 hours a week. Luckily I had an awesome boss and supportive colleagues who let me get away with it. And even with the little amount that I was working, I felt so crappy most of the time, that I was also having trouble taking care of my apartment, my cats, and myself. So, I resigned in June 2022 and haven't worked since. I was living in San Diego at the time, and the outrageous cost of housing, plus my inability to "adult" properly anymore, led me to make the decision to move back to Massachusetts and move in with my parents. It was definitely not something I wanted to do at my age, but it turned out to be the right decision.
I've been back for just over a year and in that time, I've made a lot of progress. I got approved for disability this spring, I've been able to rest and engage in self-care without stressing about work or house chores, and most importantly, I finally got diagnosed! I signed on with awesome doctors at Massachusetts General Hospital, and within a month of finally receiving all my records from Kaiser Permanente in San Diego, I was diagnosed with EGPA by my pulmonology team. I am under treatment with them, but they also referred me to the MGH Vasculitis and Nephrology Center for further treatment. The doctor there, who is an expert in ANCA associated vasculitis, changed my diagnosis to GPA because I have no history of peripheral eosinophilia. I do have terrible asthma which is a hallmark of EGPA, but it would seem that it's not related, it's just exacerbated by the vasculitis.
I started rituximab infusions in July, and I'm also on a short course of cyclophosphamide. My prednisone was also increased to high-dose for a time, but I'm already back to tapering down. Given the severity of my vasculitis and the current state of my adrenal glands, it may take a bit longer than I'd like to come off the prednisone, but I'll take it if it means I get better. The last couple of years have been miserable!
So far my nasal involvement seems to be milder than most folks. I have no major damage and my ENT even says my inflammation looks minor. My main issue is terrible post-nasal drip which exacerbates my asthma and causes a debilitating cough. I also get super stuffed up if I lie down flat and I have recurring clogging in the eustachian tube in my left ear. Otherwise it's all about the vasculitis in my lungs. My heart and kidneys are still in good shape. I do have terrible urticaria and gastrointestinal issues, but so far nobody has connected those definitively to the GPA. Both existed years before the GPA reared it's ugly head.
So that's my story. Glad to be here... well in so much as I'm glad to find others going through the same stuff as me!
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