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Greetings from Alaska...
Hi, I have been reading the forum for the last couple of months and decided it was time to chime in. I'll start with trying to give a concise history of my GPA story...
I am a 57 year old man living in Anchorage, Alaska. My adventure with GPA started some time in 2013 - I'm not really sure exactly when, but I think symptoms began in April or May. I had recently changed jobs after 25 years with the same company, and was going through an extremely stressful transition. I got a really bad cold and just could not seem to shake it. Historically I will get one or maybe two bad colds in the course of a year, but have been able to shrug them off pretty quickly. This time I would bounce back for a while and then feel crummy again. I remarked to friends and coworkers that I felt like something fundamental had changed in my health profile, because this ongoing/recurrent "cold" was not anything like I had experienced in the past. I started wondering if my new office had an issue with mold, or if the extended stress I was under had weakened my immune system. In October, I took a short plane flight for a business trip. During ascent and descent I had pain in my ears, which is not something I usually have. On landing, I found I was able to clear my left ear, but the right ear would not stay "unplugged" for more than a few minutes at a time. I assumed that I had wax blockage, or maybe some problem associated with my lingering upper respiratory symptoms. When I got home I went to my GP, who irrigated my ears, based on my history of previous episodes of wax blockage. However, very little wax came out and the hearing in my right ear was, if anything, worse than before. I went back to the same clinic a week or so later. At this point, the doc figured I had an infection, and prescribed antibiotics. After a couple of weeks with no improvement, we tried a different antibiotic. Still no improvement, so I made an appointment with a local ENT. Meanwhile, my wife and I took a trip to Las Vegas. I felt OK and had a really good time, but by this time I had no hearing on my right side and being in noisy environments sort of took a toll on me. I began to have pain and drainage from my right ear. I think it was early December by the time I saw the ENT. He thought I had a stubborn case of otitis media, did a thorough cleaning, application of topical antibiotics through a "wick", and prescribed more oral antibiotics. When I came back unimproved in a few days he was very surprised. He tried a different medication through the wick. After that didn't work, he referred me to another doctor in his practice. She performed a myringotomy. Going into this procedure, I had a terribly stuffy nose. Immediately after the procedure, the stuffy nose became incredibly inflamed; I felt like insects were crawling up my nasal passages into my sinuses! I had extended fits of sneezing. I called the ENT on call that night, and he said don't worry, just use some Afrin. A few weeks later, I was worse, still having ear pain and drainage and feeling generally debilitated. My nasal passages were clogged and occasionally bleeding. At this point the surgeon performed a mastoidectomy. She thought my nasal symptoms were due to a stubborn cold; after all, it was winter in Alaska and she had a cold too. After a couple of weeks, the doctor cleared me to take our planned vacation to Hawaii in January. I was optimistic at this point that I had gotten definitive treatment for an infection, and that two weeks in the sun would be just the thing to boost my recovery. Wrong! While we were there, I only got more sick. I completely lost my sense of smell, had very little energy, and frankly started to feel like I was dying. As our trip was coming to a close, I had an email exchange, completely by chance, with a relative who is a mostly retired rheumatologist. I mentioned my symptoms to him, and he immediately replied, telling me to get work up for ANCA, chest x-ray, and UA to rule out GPA. When I got back to Anchorage, the ENT agreed that perhaps something systemic was going on and ordered the testing. Well... I was positive for ANCA, had elevated CRP and ESR, etc. Despite efforts by the ENT's staff, there was no local rheumatologist who would even agree to review my records, much less see me on a timely basis. In early March, I ended up flying to Seattle and seeing a rheumatologist at Virginia Mason Clinic. Prior to the appointment, he wanted the local ENT to do a nasal biopsy. So... my third surgery in a pretty short interval. The biopsy kicked up the nasal inflammation terribly, to the point that I could not breathe at all out of my nose. I was sleeping upright in an armchair, constantly breathing through my mouth. I did get put on 60 mg per day of prednisone during this period, so I started to get some relief from the worst symptoms. When I saw the rheumatologist in March, he put me on MTX injections, continued the prednisone at 60 mg and scheduled a taper, and prescribed the usual ancillary meds, e.g. folic acid, fosamax, bactrim. While at Virginia Mason I also so a rhinologist, who prescribed topical steroid rinses for my nose, and bactroban ointment. Since then, I have had monthly blood work locally, and one follow up with both docs in Seattle. I'm happy to say I have been on a pretty steady curve of improvement. My nasal symptoms are still annoying, (but I have regained sense of smell) and I have not regained any hearing in my right ear. Just last week I had an audiogram and learned that I have good residual hearing in the damaged ear and would benefit greatly from a simple hearing aid. So... I'm working on getting that done. I'll see the rhinologist and rheumatologist again in September. I'm feeling mostly well, except for lack of stamina, breathing problems due to nasal scarring and obstruction, and hearing impairment. The monthly labs suggest that at this point I am dealing with damage from the disease and drug side effects, but no active disease at this time.
Believe it or not, that is the short version of what has seemed like a very long nightmare.
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