Beth
01-23-2009, 03:37 PM
Hi everyone,
My name is Beth and I live in Lancaster, PA. I was diagnosed with Autoimmune Hepititis 8 years ago and had it under control for about 5 years. Then I had a flare up and the Doctors realized I had a pretty severe case of Ulcerative Colitits and was hospitalized for 2 weeks to bring it under control. A year later I developed severe chest pain, coughing up blood and weight loss. I had vasculitis throughout my sinus and lungs. After a week of lots of specialists scratching their head and no one wanting to make any decisions or diagnosis, I was transfered to Georgtown Medical Center in Washington, DC. There I was diagnosed with Wegener's. I was treated with very high doses of IV steroids (1000mg) for 3 days before finally sending me home on 100mg prednisone and methetrexate and a lot of other meds for my liver and colitits. It's been a very very long 18 months. As soon as my prednisone was reduced to under 40mgs, my colitis flared up and then my liver function went out.
About a year ago, I started on Remicade for the colitis and finally I am feeling well. I exercise 6 days a week and eat as healthy as I can and my energy is returning. I'm even back to working 30 hours a week. I have days that I am exhausted. My predisone is down to 10mg every other day and I seem to have some trouble with eye infections and sinus infections.
Reading the other threads has made me realize I'm not alone in these struggles with various symptoms. I'm the only patient my rheumy has that have the 3 diseases that I have and so things are not always clear as to what is the best treament and if it will work. It's so frustrating.
I'm interested if there is anyone else out there who has Wegener's in addition to other autoimmune diseases.
My name is Beth and I live in Lancaster, PA. I was diagnosed with Autoimmune Hepititis 8 years ago and had it under control for about 5 years. Then I had a flare up and the Doctors realized I had a pretty severe case of Ulcerative Colitits and was hospitalized for 2 weeks to bring it under control. A year later I developed severe chest pain, coughing up blood and weight loss. I had vasculitis throughout my sinus and lungs. After a week of lots of specialists scratching their head and no one wanting to make any decisions or diagnosis, I was transfered to Georgtown Medical Center in Washington, DC. There I was diagnosed with Wegener's. I was treated with very high doses of IV steroids (1000mg) for 3 days before finally sending me home on 100mg prednisone and methetrexate and a lot of other meds for my liver and colitits. It's been a very very long 18 months. As soon as my prednisone was reduced to under 40mgs, my colitis flared up and then my liver function went out.
About a year ago, I started on Remicade for the colitis and finally I am feeling well. I exercise 6 days a week and eat as healthy as I can and my energy is returning. I'm even back to working 30 hours a week. I have days that I am exhausted. My predisone is down to 10mg every other day and I seem to have some trouble with eye infections and sinus infections.
Reading the other threads has made me realize I'm not alone in these struggles with various symptoms. I'm the only patient my rheumy has that have the 3 diseases that I have and so things are not always clear as to what is the best treament and if it will work. It's so frustrating.
I'm interested if there is anyone else out there who has Wegener's in addition to other autoimmune diseases.