Welcome Jo,
I'm glad you found us. I hope we can help as you deal with this stupid disease. Your diagnostic process sounds similar to mine - a process of elimination. When I became ill in December 2010, I had rarely been sick, but I went downhill pretty quickly and spent a week in hospital in January 2011. When I was admitted, the only thing they ruled out right away was cancer (whew!!). They thought I might have TB or some type of pneumonia. When none of the other possible diagnoses matched my symptoms, they saw the high ANCA test and zeroed in on WG. When I asked if they had another possible diagnosis, they said no. They explained that the risk of treating me for WG and me not having it was pretty low - and that if I didn't respond to treatment, they would have to figure out what else it could be. I responded pretty well to treatment and enjoy pretty good health today.
Many doctors use MTX as a maintenance drug after a medicine-induced remission is achieved. Initial treatment at disease onset is usually cytoxan or rituxin for 4 - 6 months plus prednisone and bactrim. My current meds are 15 mg/week of MTX, 7 mg/day of pred, and a bactrim tab on M-W-F. I'm having no issues at this point. I began the year at 40 mg/day of pred and have slowly come down to 7. My rheumy wants me to taper at 1 mg/day less every two weeks. I'll continue that as long as I'm feeling good. I'll call her at the first sign that all isn't well - especially after I try to get below 5 mg/day. My rheumy also said not to ask her about coming off MTX for at least two more years.
Some things to be concerned about with pred that the others didn't mention is that with long-term use, you may experience a lessening of bone density - osteopenia or osteoporosis. I take a daily calcium and vitamin D supplement upon my doc's suggestion as I do have a little osteopenia.
I took a look at the Vasculitis Foundation website (EUVAS The European Vasculitis Society) and found that there is a WG specialist at Addenbrooke's Hospital in Cambridge:
JAYNE, DAVID, M.D.
Box 118, Renal Unit
Addenbrooke’s Hospital
Cambridge CB2 2QQ
United Kingdom
Phone: 44-1223-217259
Fax: 44-1223-586797
www.vasculitis.org
I know nothing about this doctor, but perhaps some of our friends in the UK can enlighten us.
Good luck, and don't be afraid to ask questions, etc.
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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