Hi Trish,
I am new to this. I finally found others who suffer with WG. I live in Auckland, New Zealand and I haven't met anyone else with WG - until now
. You have had a quite a few trials with yours and I feel for you. I was diagnosed in November 2006. It started about July 2006 what was like a prolonged flu but it wouldn't go away. My nose was bleeding alot and the inflamation spread to my eyes than down my throat and eventually to my lungs. One morning I coughed up blood and my husband took me straight to Waitakere Hospital. I had X-ray's on my chest and a doctor said she suspected WG. I went "what?" I was than transferred to North Shore Hospital where I had a ultra sound and CT Scan done, lots of blood tests. I had a nose biopsy done - this confirmed I had WG. I was put on a cyclophosimide and a 50mg of predisone. I am 35 years old and I have been married for 3 years to a wonderful supportive husband. Due to the illness and medication I have gone through early menopause and I cannot have children. I am now on Methetrexate and folic acid. I have had shingles and had biopsy done on my kidney because there has been blood in my urine and now I have swelling under my armpit with discouration and have had a biopsy done on that ......I don't know what else will come arou nd my corner.....
I would love to hear from you and share our stories.
Thanks
Natalie