New from Perth, Western Australia

[Deanne Hull]

Hi my name is Deanne and I am from Perth, Western Australia. I am new to doing this sort of thing so I am a bit nervous. I have been diagnosed with WG since Sept 09 and have never ever heard of this disease and nobody else has either. I am very lucky to be here and have just recently had a slight flare up with Irisitis. This disease presented itself with sinus and flu symptoms and weight loss not long after a gall bladder operation and when we were in the midst of a swine flu epidemic of which i thought i had. As there is no support group over here i thought i would look on line and to my surprise there are a lot more people with this condition that i thought. I am just wondering has any body had therapy and how are the families coping. I have my ups and downs with this thing but mostly just try and get on with it. It has been an interesting journey with the medications and what it has done to my body some of which i find very funny..

it is nice to know there are other people out there as I thought I was the only one and it is hard to explain to friends how you are feeling..and as much as they try to understand they don't really. I have had wonderful support from my doctors and they are probably using me as a test case which hopefully will help other people in the future.

[elephant]

Welcome Deanne! Wondering what medicines your on? How is your eye? Are your sinuses better?

[Deanne Hull]

Hello, how are you going? I am on 25mg of Prednisolone and 100 mg of cyclophosphamide and also on cholesterol medication, anti dressant medication, and esomeprazole for the stomach. My eyes are better still on steriod drops for 2 more weeks, they were terrible and i could not seen at all outside and could not drive for a couple of weeks. It has not affected my vision so that is a bonus. At the moment i am experiencing pain in my sinus around my right eye which can be bad first thing in the morning. Sinus not too bad but apparently i do have some hideous snoring according to my hubby which i have never had before.

[Sangye]

Hi Deanne, I'm glad you found us. You're not alone anymore!

I've gotta get to bed, but just wanted to say hello. I started therapy when I got dx'ed and still go once a week. I couldn't have made it without that help.

[Natalie]

Hi deanne Im on the East Coast , I thought I was the only one too in Oz anyway ! but when I found this forum a about a month ago I was quite suprized and releaved at the same time
. Its a good thing being able to talk to people who have been through the same stuff . welcome Deanne and will chat more down the track .

[Deanne Hull]

Thanks so much, its 10.45 am here so i am not sure of the time difference of australia and america. I might have to
explore therapy as well.

[Deanne Hull]

Thanks Natalie, i am very overwhelmed with the lovely responses so far, thank you!!!!

[Col 23]

Hi Deanne
Im in Perth Western Australia and was diagnosed in Dec 2009. I attend RPH, where do you go and who is your Rhuemy.
Col 23

[Deanne Hull]

HI I see a Dr Simon Wei who is a Kidney specialist and a consultant Nephrologist and who is at SJOG Hospital in Subiaco, orgninally i was admitted to Hollywood Hospital. How is your condition and how are you managing...

[DEE]

hi Deanne imm in the UK
i to have had eye and sinus issues and yes my hubby says the snoring can be really loud sometimes according to hubby
im on similar meds to you plus others for additional problems that i have
you have arrived at the right place
the support on this site is brillant , not just for information but sometimes just to be able to let of steam
welcome DEEx