Hello

[BrianC]

Hello Everyone

After reading some of your experiences I feel a bit of a fraud. I was diagnosed 6 years ago now with WG, this took some time. For me I started off not being able to breath through my nose, had blood tests etc nothing to report. Around the same time I started with an annoying cough, the nose got worse and I went to see ENT. He reamed me out which improved things and seemed to get rid of the cough until a year or so later it came back with a vengeance. Did the rounds with the GP, who is excellent and I cannot fault him at all, chest xray showed something in there as did CT scan. Usual asthma meds didnt help so ended up having lung biopsy, at this point I couldnt work because of the cough, lung promptly collapsed 3 days after biopsy and results were WG.
Loads of steriods and azathioprine seemed to have it in check, in fact for the last year I have been on 7.5mg pred on alternate days which was good. At the start of this year I started getting real bad sinus pains then the nose bleeds started so back to hospital and it was active again in the nose. Upped the steriods and azathioprine and again this seems to have it in check, saw doctor this week and he wants to start tapering the prednisolone again, hurrah. So in a nutshell this is my WG ride, had all the aches, tiredness, insomnia that goes along with it and the treatment, the highs the lows the why me.

Regards
Brian.

[elephant]

Hi Brian, welcome. You are not a fraud, so glad you caught it early. This is a life long disease and WG takes some sneaky turns and twists that we have to be on top of our symtoms. How slow are you tapering the prednisone. I too had a hard time getting off prednisone, my sinuses and ears started to act up. Right now I am on 9 mg of Prednisone, and tapering 1 mg every 6 weeks. Hoping that will work.

[Sangye]

Hi Brian, welcome to the group! No one with this diagnosis is a fraud. You might have had it easier than some, but it doesn't sound like you've had it easy. And even if you did, it's still Wegs and it's still life-changing to have that diagnosis. I'm amazed at how long you were able to go with lung involvement before it got diagnosed. Lung involvement tends to move more slowly than kidney, but that was reaaaally slow!

[Col 23]

Hi Brian
Welcome. Glad you joined the group wish you well with the tapering of the pred and your not a fraud. The meds side affects, the pain and symptoms of weg are very difficult to deal with. Just waking up each day and wondering how you are each day is tough. Is good to hear that the meds are working for you.
cheers Col 23

[Nancy]

Hi Brian - Be glad that it (the Dx/Tx) came easily (?) - I have had it very easy for a long time and then an recent event ( probably an H1N1 injection) changed me to the state that I have heard other people discuss for some time... But no fraud... Welcome - I am also new and people here are very nice... : - ) Lots to learn about many things...

[sharon]

Hi Brian,
welcome, i am also new, having people who now what you're going through is great, especially when drs look at you a bit weird, with some of the strange things that happen to us. You might like to look at Sangyes thread about the weird and strange symptoms of wegs. Very interesting, you might even find out that it is not all in your head and no you are not going crazy!

[jola57]

Hi Brian, no never a fraud. This affects all of us differently and our diagnosis and outcomes of treatments varry as well. One good thing is that now we know for sure - we arae all unique- LOL

[eileenv]

Hi Brian,
Welcome to the group i haven't had a firm diagnoses yet i am still waiting to see the ent specialist. I had a few bad weeks with jiont pains which made my insomnia worse. Still others i know are far more worse than me with there lung and kidney problems still i hope you keep resonably well and keep on top of things.