Hey all, this is my first post here (although I've been a member since 2019). I'm grateful for having found this forum of people who can relate to this aspect of my life that I haven't been able to talk about much.

I was first diagnosed with GPA (I'm more familiar with the name "Wegener's") in Feb 2012 when I was 16. My symptoms manifested in Dec of the previous year one day as a sort of "pressure difference" in my left ear, similar to what one experiences in a flight, only this feeling didn't stop with the Valsalva maneuver. That same night, I started experiencing immense pain in that ear, and visited an ENT immediately the next day.

I was diagnosed with otitis media and prescribed a course of antibiotics. An otoscopy revealed that the eardrum had swollen and fluid had begun collecting behind it. The antibiotics didn't have any effect, and the pain remained just as bad. Additionally, the fluid began leaking out of the ear. The doctor recommended starting me on a stronger course of intravenous antibiotics and admitting me, but my family looked for a second opinion.

The next ENT prescribed antibiotics again, although he chastised the previous ENT's prescription as being unnecessarily strong. This too didn't have any effect. I did the rounds of a few ENTs after that, and was diagnosed variously for otitis media (again) and once for a fungal infection (and applied anti-fungal cream in my ear for a while). The pain and fluid discharge continued all this while, and my sinuses became involved, with a swelling of the nasal passageway (bringing with it breathing difficulty and increased nosebleeds, even when sneezing). My gums also became swollen in what I learned was called "strawberry gingivitis". My hearing in the left ear had also been severely impacted.

The last ENT I consulted finally decided that the involvement of the gums was too unrelated to be otitis media, and decided to order a PET-CT (but not before ruling out lymphoma with a biopsy of the septum and gums). This finally led to the diagnosis of Wegener's, with the additional revelation of the presence of lung nodules.

I rapidly consulted with a rheumatologist and was started on a course of methotrexate and prednisone. These made almost all my symptoms disappear seemingly overnight. I was completely fine within a few weeks (although I could have done without the weight gain and acne brought on by the steroids). An ENT suggested draining the fluid still collected in my left ear, which improved hearing considerably (although I'm still left with persistent tinnitus). The dosage was progressively reduced over a couple of years until I was completely off all medication from 2014-17 while in college.

Unfortunately, in Jul 2017, I started experiencing severe joint pain and persistent, painful coughing. Luckily, since I already had a Wegener's diagnosis, this was quickly caught as a flare-up and I was put on a dose of methotrexate injections, and then steroids. I'm back in remission on a reduced dosage now.

I'm trying to maintain an active lifestyle by working out and eating healthy, as well as managing stress. Both the initial Wegener's episode and the flare-up were arguably brought on by stress, the first when I was preparing for college entrance examinations and next before I was due to travel abroad for my Masters.