Well, to start with the obvious my name is Chris. And I been living with WG for more then a year now. Before I get started I will apologize to everyone for the wall of text my post tend to be. I get a thought in my head and just go with it. I promise to try to keep it to a minimal on this forum. So here is my story. Last march I decided to visit the local medical express for symptoms, that to anyone who has never experienced them, wont seem like symptoms and will seem strange. I had a sharp stab in my sinus cavity. I mean blockage and something was stabbing me. The doctor who checked me out was very understanding and had nasal surgery before. So she assured me this was a scab that some how formed in my nose probably from using a antihistamine as I had a cold for the whole month before and used Afrin for the first and only time in my life. She prescribed me to take saline in my nose 3 times a day plus some ayr gel and flownase. This was a relief to me because while I couldn't figure out how I was convinced I broke my nose and had cartilage in it jabbing me it hurt that much. Fast forward 2 weeks. The "scab" didn't feel like it moved out though I thought I was seeing pieces of it here and there when I blew my nose. Any rate I had a vacation time coming and took it. Over my vacation I ate very little and slept a lot. But being the stubborn person I am, I just said it was my body reacting to this issue I was having. After vacation when it still wasn't out 3 weeks later and it seemed to be a lot worse with a stuffed up nose and everything I went into the doctor again. They said it seems to have developed into sinititus. <spelling> Put me on anti-biotics and that was it keep up the saline till its out. I return to work and my coworkers keep telling me how awful I look <after all I barely ate>. I told them I was feeling fine and the truth of it is to this day I honestly didn't feel bad outside of the sinus issue. Well they started saying things to my boss. After a week of him watching me work. He said Chris I have never done this before and I don't like that I am doing this now but I have to. You are not getting better your breathing is irregular <something I didn't notice> You are going to the emergency room right now and are not allowed to return to work without a written doctor's approval. Ok. So after a short time in the ER the doctor there said well you have small hole in your ear drum. <I had a hard time hearing in the left ear> and it was probably caused by the build up in your sinuses and yes they are extremely infected. But some stronger antibiotics and that should be it plus something for the ear. IS THERE ANY THING ELSE? Honestly doctor I don't notice it but people tell me I appear to struggle with breathing. Hmmm I am going to do a chest ex-ray before I let you leave. Ok your the doctor. So I was 5 mins from walking out the door. To now being told your not leaving tonight your ex-ray looks like you have pneumonia with a abscese in it. 1 week later of testing trying to figure out if its a fungal infection. How are these 2 related. And why is nothing testing positive the lung doctor hinted it may be this strange thing I never heard of called wergners granulomatosis. Another blood sample sure I can do that. Tissue sample ????? how so..... There was talk of cracking my rib cage open because the tissue was too hard to cut with a small surgical tool. I freaked told them absolutely not. <heart trouble is hereditary in my family both sides I didn't want to go down that avenue until I had to go down it.> They tried a needle biopsy instead and sent the results out would be back in a day or 2. In the mean time I developed a rash. The lung doctor seeing this and already having the anca count from my blood test started me on a steroid certain he was right. Guess what... well I'm on this form so no need to guess. They called in the rheumatologist who had treated the most cases in our 3 city area. a whole whoopin 3 made me feel good <he actually turned out to be a great doctor I lucked out>. He started me on prednisone 60mg Bactrim ds and 200mg of Cytoxan every day. Eventually I got a rash and he took me off the Bactrim. And I weened off the prednisone. But here is I guess what made me sign up for the forum. The concern I have. My anca while dropped isn't enough for him to even reduce the Cytoxan dose and I been on it since last April. This has raised the doctors eyebrows also. Because as your aware Cytoxan has harmful side effect itself with prolonged exposure. All risks I obviously knew being treated. But the doctor Is considering a different drug treatment and may send me to a major medical university for a 2nd opinion. Are the other drug treatments any better for me? Something tells me probably not. Thanks to all who waded thru this wall of text <sorry again I will try to get better I promise.> -chris
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