Hello All,
I have looked around the forum on and off for a few months now and finally decided to sign up. Anyways I will start with a brief version of my experience as I do not have the time right now to lay it all out. I was diagnosed when I was 21 in December or 2007. Judging by most of what I have read it was caught fairly quickly as my first symptoms started only 2 or 3 months prior. My first effected area was my ears. There wasn't much pain involved but I did lose my hearing (all most completely) for around a month. After 2 months or so of trying to figure out the ear issues I started to develop lung and sinus issues. Coughing up blood, wheezing, the whole works. After dealing with that for a week or so I was admitted to the hospital for tests and whatnot. After 4 rough days in the hospital of running every test imaginable I was scheduled for a lung biopsy the morning of December 24th. The next thing I know I wake up in a hospital room connected to multiple different machines with no idea of what day it was or what had happened. That night I learned that it was December 27th and that after the biopsy they decided to put me on a ventilator because I was in such rough shape. To this point I had no idea what I had or anything. As my parents were leaving for the night I asked them what the biopsy found and they told me it was Wegner's Granulomatosis. Anyways I was in the hospital another week following that and was started on Prednisone and Cytoxin. As the next weeks went by I continued to improve. After a few month we began tapering the prednisone at every doctors visit. After 8 months I was switched off of Cytoxin to methotrexate. I was then solely on the methotrexate for 2 years and then switched to azathioprine. Luckily since my initial bought with it I have not had any major flare UPS. It was suspected that I had a mild flare up a year or so ago but my doctor added one pill to the dosage of azathioprine and put me on prednisone for a month and that took care of it.
One question I have is does anyone have consistent nasal congestion and drainage? I have been dealing with it for a few months now and it is extremely annoying to be coughing and clearing my nose so often. And is there anything that you have found that has help/eliminated the congestion?
Like I said that was the very condensed version of my journey. Hopefully I will have the time to write out the whole thing.
Anyways I hope everyone is doing well and I look forward to reading and sharing in your journeys
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