Hello all. I was recently diagnosed with GPA after a week in the hospital. I’m still feeling pretty gobsmacked by it all, just as recently as September I thought I was pretty healthy.

Thought I was having a cold, then started having some intense pain in my jaw and face, so off to the urgent care clinic. Looks like I have a sinus infection, something I never had a problem with before. Weeks later and multiple rounds of antibiotics and visits to an ENT and nothing was improving. Now things had spread, pressure and pain and hearing loss in both ears. I used up all my sick time at work and even had to take some unpaid days off.

My ENT recommended sinus surgery, correction of a minor deviated septum, and vent tubes in my ears. I went through with that, using my vacation time, hoping things would start to improve, and they did for a short time. At least as long as I was on prednisone following the surgery. My sinuses started feeling a little better, but I still had horrible pressure around my right eye in particular and constant headaches. My ears would not clear up, the pressure was driving me crazy and the hearing loss was getting worse. Meanwhile I was starting to feel off in other ways that I didn’t connect to the sinus and ear problems. The ENT switched my antibiotics to two strong ones, and about a week later I just was feeling awful.

My knees and feet ached and shot stabbing pain when I stood and walked. I had some trouble urinating, taking forever to empty my bladder. On and off fever. And a sharp stabbing pain in my upper abdomen/lower chest when I moved or inhaled too deep. So my wife took me to the emergency room where they were confounded by these seemingly unrelated symptoms. I honestly feel so grateful that they took my complaints seriously though, and they ran a battery of tests. When they found nodules in my lungs and some troubling bloodwork the doc decided to admit me for further testing.

I thought maybe I was just having a bad reaction to the antibiotics or something. After seeing several specialists, CT scans, ultrasounds, a bronchoscopy, and so many blood tests they came back with GPA. I had never heard of GPA, and never would have thought I was likely to have an autoimmune disease. I’m still sitting here thinking “Oh man, what if they’re wrong?” But I do think maybe there were some hints of this further back that I was just ignorant about.

Right now I’m on 40mg of prednisone, which seems to be keeping the inflammation suppressed for a good chunk of the day, but by the late evening I feel things starting to flare up again. Still struggling with the loss of hearing and tinnitus, but the pressure in my ears has reduced and I’m not getting flashes of vertigo like I was. The aching joints has spread to my shoulders and elbows. I sweat like crazy when I sleep. The problems with urinating has eased but not gone away. The unfortunate thing is that I can’t start treatment yet. A culture taken during the bronchoscopy turned up positive for aspergillosis so the Infectious Diseases doctor wants me to complete a four week course of antifungal before going on any sort of immunosuppressant.

Right now the most stressful part is that I cant work in this condition. My job is fairly physical and involves climbing and lifting and working on high voltage systems, and being able to hear what’s going on around me is pretty important too with heavy equipment moving around. I have short term disability insurance through work, but I’m having a hell of a time getting them to understand all of this mess to get it approved. They’re used to simple problems I guess: broke a bone, be back when healed. Being sick is stressful enough without worrying about paying the rent.

I just felt the need to express all this. I’ve been mostly cooped up in the house for a while now.