Diagnosed WG in June 08

[Tony]

Hello from Great Britain, this is a very welcome site to hear from real people who have the same thing as me!

My story is much the same is for others here. I'm 48. I was diagnosed WG in June this year 3 days after being admitted to hospital with deteriorating breathing, no energy, painful muscles and joints in limbs, fever, weight loss, no appetite, dark urine, runny nose, cough, skin lesion on penis (removed 2 months earlier - thought at the time to be cancer). I'd been feeling unwell for 2 or 3 months. Prior to that I've had a lifetime of good health and good fitness.

I was then in intensive care dependent on pressurised oxygen and with failing kidney function. I was immediately given steroids, cyclophosphomide and 5 sessions of plasma exchange. I recovered well and was let out of hospital after 3 weeks at the end of June.

My lung and kidney functions returned close to normal quite quickly. So far, since being out of hospital, I've felt ok and my energy levels are surprisingly good and are not that far from how they were before all this started. I'm now on 17.5mg a day prednisone and 7.5mg a week methatrexate. Cyclophosphomide was stopped after 2 and a half months. I'm back at work full time.

I've been very lucky so far. The only lasting symptom I seem to have is Reynauds in my hands. I was fortunate that immediately after diagnosis, I was moved to St Thomas' Hospital in London, under the care of Dr d'Cruz, who is one of the country's experts on Wegener's. He knew exactly what to do and I go to see him every month for a check up.

I look forward to continuing reading others' experiences, views and tips.

[Jack]

Hi Tony,
Sorry to hear of your diagnosis, but great that it was made in a reasonable time. Not many of us get away without suffering some permanent damage, but the prognosis for you sounds quite good. You are lucky to be seeing a specialist in the condition, it will help you a lot. My hospital is the Q.E. in Birmingham where they also conduct research into Wegener's. Unfortunately, I was not referred there until it was nearly too late, but at least they have been able to keep me going for the past 20 years.