new member in queensland australia

[shauneva]

Hey there my name is Karen have been reading this site for a little while but have not posted anything as yet. I was recently diagnosed with wegeners in may and have got more information from this site then i have anywhere else to be honest i still dont have my head around i the whole idea. But thanks to you all im learning more each day. I have sinus troubles blocked tear ducts deafness in one ear and my throat is blocked about 40% no lung or kidney involvement thank goodness. After reading about Mark passing im feeling a little afraid I dont recall anyone checking my heart but when I see the doc on Friday i will be asking for an echocardiogram for sure. I have blood test every week but only ever one urine test at the start is this the norm my doc said they can check any lung or kidney involvement from my bloods
Cheers Karen

[Hammy8241]

Welcome Karen.
I was diagnosed in February, took three months to learn how to pronounce the flipping thing and am only now just beginning to come to terms with it. Because it is rare, information is not readily available and it is here on this forum where i have learnt so much. I got my hearing back quite quickly after starting the Pred but even now I still have some sinus issues.( Although they are very much better than before). Do insist you get your heart checked out.

WG is also a lonely bug as we dont always look ill to others and understanding even from loved ones, is not always forthcomming. However, one benefit of this forum is that other members are never slow in comming forward with support, comfort, advice and wisdom which just sometimes can turn a bad day into a good one.

Lets us know how thing progress.

[elephant]

Hi shauneva! Welcome! I was wondering are you seeing a Wegeners specialist? If not you can look one up at the vasculits foundation. I see Dr Carol Langford at the Cleveland clinic. What medicines are you taking? How are you feeling now?

[DEE]

welcome Karen
as Hammy said were here for good and bad days and there has been times on bad days everyone has help me through it
it often does us more good to have a moan or vent than take another drug
so feel free to vent and moan like the rest of us there is always someone to listen day and night DEEx

[Kimbangu]

you will learn lots here that's for sure.

When I was first diagnosed I told everyone I knew that I had Wegener's Granulomatosis but if I could do it all over again, I'd just say I had "Vasculitis" and leave it at that. I have had funny reactions when I tell people I have "Wegener's Granulomatosis"... including people bursting out laughing, or even saying "That's a mouthful!"....

If you tell people you know - and I speak from experience- the exact form of Vasculitis you have, they can hardly wait to get onto google and type it in. Then suddenly they are the experts, and yet you don't appear to be all that ill , which confuses them. You will really find out who your friends are in the next 9 months or so.

[Sangye]

I have blood test every week but only ever one urine test at the start is this the norm my doc said they can check any lung or kidney involvement from my bloods
Cheers Karen

Hi Karen, so happy you found us and started posting. The frequency of blood tests depends on which drugs you're on and how long you've been on them. I've never had kidney involvement, but my Wegs specialist checks urine every time I see him. When I was on ctx, he did blood and urine every 2 weeks. Now that I'm more stable, he only does them every 3 months when I see him or if something comes up in-between visits.

They CANNOT determine lung involvement from blood work. They can measure kidney function from blood work, but also require urine testing.

I hope you'll take everyone's advice and get a Wegs specialist involved asap! We sure have a lot of new Aussie members lately-- ask around for the best Wegs docs.

[JanW]

Welcome, Karen. My rheumy also checks urine every time I go (every six weeks) as a standard protocol. Also full panel of bloods to check for inflammation as well as potential side effects of the drugs.

[Col 23]

Hi Shauneva
Another aussie, welcome to the group. I felt the same as you when first diagnosed. Couldnt get my head around it for awhile. This group was very understanding
about my ravings in the early stages. Its important that you read up as much as possible in the early stages as this helps. When I couldnt sleep with 80mg of pred and having melt downs initially, I looked up everything on the net. Remember that some of that may also be outdated so check the dates of some of the literature. My Rheumy doesnt always check the urine as she also said she can tell by the bloods. I have had it checked by my regular GP every 2 months anyway.
Its all a bit of a shock but take one day at a time and rest when you need to rest.
cheers Col 23

[Cubby]

Welcome Karen,

I am a friend of a possible Weggie. This is the best place I found online too. Andrew has a wonderful group here and I hope we can all learn together.

Hugs-

Cubby

[andrew]

Awesome! Another Aussie! W00T!!!

Welcome Karen. As toher have said, do get your heart checked out. You'll learn to be insistant and stubborn with docs quite quickly if you already aren't :-) What meds are you on at the moment? As far as urine tests are concerned, I give the doc some of my wee for free every three months but I have kidney involvement so that would be pretty much standard. If you don't have kidney involvement it would be less frequent and would probably be done if one of your blood tests came back a bit weird.

I'll also add that if you don't currently have a Wegs specialist, get one. I can ask my guy here in Canberra if you like. He seems to know everyone, just might take him a while.

What's the feedback from the doc about your throat?