Hi from New Zealand

[MCC]

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]

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]

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.

[jola57]

Anything that helps us is a positive. I hope the study works out

[elephant]

Welcome Mandycc, thanks goodness you disease was caught soon. Let us know how the trial goes. Hang in there.

[moyan]

Hi Mandy, welcome here. You sure found the right place to learn and enjoy.

[onatreetop]

Wecome and hope we can all help you. Scary business this stuff but all of us have helped each other in so many way s to understand and even monitor whats going on with ourselves when we arent sure. this forum has trully given me a new will and way of getting thought anything I have been hit with. I was dx's not long ago but I wasnt that far along so I was caught very early and very greatful so now as the changes come I have a wealth of knowledge here and support. The relief alone of knowing these wonderful people from around the world who take there time and care is truely a gift. I am glad you know what it is that you have now and hope the treatmeat is quick to act for you. It will take some getting use to but the outcome is moving forward!!! Feel better soon!

[Sangye]

Hi Mandy,
I'm so glad you joined the group! I'm also glad you're getting care from someone who consults with Wegs specialists. That's vital for Weggies.

How much pred are you on?

[MCC]

Thanks everyone.

i am on 50mg Prednisone, I'm not sure if this is a particularly high dose? I've been taking it a week now. Can I ask how soon people have experienced side effects such as weight gain/moon face?

I have been selected for cyclophosphamide for the trial.

[elephant]

Yes, 50mg of Prednisone is a high dose. It took a month for me to get weight gain / moon face look. Everyone is different. If you can walk or exercise, do that. Don't exert your self.