Aloha! Glad to find this site!

[Gardenia13]

I am new here. Originally from Honolulu, Hi but now reside in Kaysville, Utah. I joined on behalf of my husband who has IgAnephropathy. He has not been diagnosed w/ W.G but was told today at the doctors that that could be a possibility. He has a hard time breathing, he suffers aches and pain but only in his calf & lower back area. The pain has been consistent for over 3 years now but his hard time breathing went off and on twice within this year. Last time it lasted for about 3 weeks then all of a sudden got better. Well, his difficulty breathing re-started a few days ago and has not gotten better with a prescription pump that has steroids in it. Today he has been referred to a doctor that will do an x-ray & ultrasound. Although after reading some of your post, it makes me think that he should do a biopsy to find out if he has W.G. instead? I am new to all this, so please if any of you have suggestions, advice , tips that I can take with me when I go to speak to the doctors tomorrow with my husband, that would be greatly appreciated. Thank you and may you all have a blessed day!

[Dirty Don]

Welcome to you and your husband Gardenia...glad you found, sorry you had to. Lots of info, caring, and sharing here...good peeps! Just off the cuff, what he's experiencing doesn't sound like WG...yet. WG pains tend to shift from area to area in a flare. A lung biopsy is the best method to dx WG...but...do you want the docs cutting on him without more secure data on WG or whatever? Docs could try a nasal/sinus biopsy first. Blood work should also at least indicate some areas to be watched. I'm not one for holding off, but it appears no one's even reasonably sure of what it may be. Docs could start pred just to be safe. Best to you both.

[DJS]

The chest x-ray is a good way to see if there is something unusual in the lungs, then if there is they can do a bronchialscope to suck out a sample. Then they grow a culture. It took about two weeks to find Wegener's in my wife.
but then her lungs were full of the globules so that she was on Oxygen in the hospital. Like many others, she was close to death when her treatment started.

[drz]

Utah has a Weg expert (Koenig) so even if it is just a possibility I would go there for a consult. Biopsy are only effective in confirming Wegs if the sample is from an area where it is active. Kidney biopsy is most successful if there is kidney involvement, then lung if the Wegs is in the lungs and then are other areas are more problematic since one can have Wegs and not find an active sample. Lab work and clinical history are often used to diagnose Wegs when there is not confirmation by a biopsy.