Hi from New Zealand

**MCC** · 01-12-2010, 04:43 PM

Hi,
I've just been diagnosed with Wegeners last week and am glad to find a support forum!

I'm 29, from the UK but currently live in New Zealand. I got ill about 2.5 months ago with a constant runny nose, then sore knees and other joints, night sweats and a foot rash, so ended up being referred to hospital where I was a mystery to them. I was in and out for three weeks before a diagnosis was made - I was initially told I had TB, then kidney cancer, then an abcess, then an infection or autoimmune disease. I saw about 5 different teams in the hospital, had so many scans and tests.

I've just started treatment of prednisone and all the associated drugs to stop the side effects, and had cyclophosphamide on Friday. Felt a bit sick after, but so far ok. I've agreed to go into a trial testing cyclophosphamide against mycophenolate, so may be swopped onto that.

Hope to get to know you all.

**jola57** · 01-12-2010, 04:51 PM

Hi Mandy, the long diagnosis is very usual, actually yours was relatively very quick, Since you talk about trials, I assume you have specialists in WG taking care of you. I also assume you have had IV cyclo, are you in a study where you realy don't know which drug you are taking?

**MCC** · 01-12-2010, 04:55 PM

Hi Jolanta,
My doctor in NZ is also from the UK and knows a lot about Wegeners and is in touch with specialists in the UK who are doing the trial. So far I've had one IV cyclo. I will be told which drug I'm having in the trial, but it is totally random, so it could still be cyclo.