Question

[Brooke]

If someone has sinus and airway involvment, such as myself is there a chance the Wegener's in the future can affect my kidneys? Is there a certain likelyhood or unlikelyhood? I guess I realize that it could affect anything.... I dunno.

[drz]

If someone has sinus and airway involvment, such as myself is there a chance the Wegener's in the future can affect my kidneys? Is there a certain likelyhood or unlikelyhood? I guess I realize that it could affect anything.... I dunno.
Right, Wegener's can attack any part of your body at anytime for no reason. Some things seem more probable based upon your history and what happens to others (most) people. I find there is little point worrying about what might happen with the disease or anything, it just takes away from energy you need to deal with whatever does happen. You don't need to deal with it till it happens and many (most) things don't happen that we worry about.

[Jack]

My disease started with sinus problems, but was only diagnosed 18 months later when I suffered renal failure. Lung involvement came much later and was not associated with a Wegener's flare, but just crept up on me.

[elephant]

Brooke, Wegeners has attacked almost every part of my body except the trachea...but really never had it checked out. As long as we stay on top of our symptoms and relay this to the Rheumatologist or expert that these are going on....we have a better chance of keeping the damage minimal. We never know what's going to happen to us excluding WG, thinking back a year ago ..never thought all that stuff would happen.....I am thinking this year is going to be a good one!

[JanW]

Doesn't make it more of less likely, unfortunately, Brooke. What you have is referred to in some circles as 'limited wegeners' vs. wegeners that involves major organ systems, but my docs have made it clear that it could strike anywhere at any time, which is why I'm still giving urine and having kidney checks at every visit (every six weeks) because that's one place it could be affecting and I wouldn't know it.

[Sangye]

Last year I asked Dr Seo how likely it was that I'd someday develop kidney involvement. He said if a Weggie has had other serious involvement (eg lungs) without kidney involvement for a long time, it was highly unlikely that they'd ever develop kidney trouble. At that point I'd had Wegs for 3 years and he said he'd be totally shocked if my kidneys ever became involved. It's not impossible, but very unusual.

I don't know if smaller lung nodules would count. I've had severe alveolar hemorrhaging, which is one of the most dangerous types of involvement. I guess the thinking is that if the Wegs can be that active and still not bother the kidneys, then it's probably not going to in the future.

Having said that, he still routinely checks urine at each visit and makes sure routine blood work for kidney function looks okay.