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Thread: First post - diagnosed in 2012

  1. #1
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    Default First post - diagnosed in 2012

    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.

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  3. #2
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    Default Re: First post - diagnosed in 2012

    Hey there thanks for sharing your story and sorry you got auto-moderated

    Ear pain is the worst. Very debilitating. Glad you got the diagnosis reasonably quickly though. Awesome that the Metho and Pred worked so well - well done on getting back up and at 'em Hope you can travel soon!

    Thanks again for sharing.

    Cheers
    Andrew
    Forum Administrator
    Diagnosed March 2003.
    Currently but not permanetly residing in Canberra, Australia.

  4. #3
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    Default Re: First post - diagnosed in 2012

    Welcome to the club no one wants to join.

    Your disease onset sounds like the first couple of weeks of mine. Glad you have a doc who is giving you proper care. Thatís the majority of the battle with wegs. Keep us updated on your progress and experience.

    BTW, my disease onset and most recent flares were associated with stressful events. Disease onset followed a couple weeks after we moved to Columbus (our first intercity move). Most recent flare was in 2019 after we moved into our condo with the associated downsizing.

    Been off pred for almost three years and get semiannual rtx.
    Pete
    dx 1/11

    "Every day is a good day. Some are better than others." - unknown

    "Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD

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    Default Re: First post - diagnosed in 2012

    I stated in my first post that I belonged to a Wegener's group on Facebook but eventually gave up Facebook. It's uncanny how many people on that group, and myself, who's symptoms started with the left ear. On my first trip to urgent care, they said they didn't see any infection and sent me home. A week later, I went back in pain and they said it was infected and gave me an antibiotic. A week after that, I was diagnosed with bacterial pneumonia. Around this same time, I had full blown sinus infection and both of my Eustachian tubes were inflamed to the point that my left one was bleeding. Bactrim did not touch it and later a round of Cipro did the trick. All of this was caused by me blowing off a vacuum cleaner micro filter with an air compressor and not wearing a mask. I'm sure some of the crud that was on that filter got into my nose and that is what started my WG journey. But of course, at that time, no doctors knew or guessed that it could be WG. I went 4 months in pain all over my body and was taking 800 mg of Ibuprofen every 6 hours for those 4 months. That, along with the Vasculitis, my kidneys got destroyed. Rituxan, Azathioprine, and Prednisone taken for 2 years got me into remission and I have been there since Sept 2019. Luckily, my kidneys have improved over time and my creatinine has gone from a high of 8.0 down to 1.96 which was my last lab result. Here's to hoping that all stays well with me and everyone else on this board.

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