?Limited Wegeners

[Jack]

I have posted in the past that I hate the term "limited Wegener's" because I really don't think there is any such thing. It just describes the state of the disease when not affecting many organs, but we all know that this can change at any time. It is not a helpful description.

[pberggren1]

Thanks for this info Nancy.

[elephant]

Nancy, I hear you...well stated! "Who let the dogs out?" LOL

[JanW]

I think that if doctor's are telling their patients (I hope that they are not), that where the WG starts out is the only place it will ever go, that this will stop. Limited wegeners, at least how I have always heard it referred to by doctor's refers specifically to no kidney involvement and I believe that Sangye said that Dr. Seo says that the longer you go without kidney involvement the more remote the possibility becomes. But WG is ALWAYS systemic, whether it affects your kidneys or not, and certainly you shouldn't assume that you have a lighter case just because it limited.

[Sangye]

Yes, that's what Dr Seo said. You're right about Wegs always being systemic. For example, Weggies are 23% more likely to develop blood clots. That happened to me right at dx, even though my only involvement was lung. Wegs affects the vascular system, which is everywhere.

Nancy, I LOVE the Who let the dogs out... That should be our theme song for a flare.

[MyerscoughClan]

My daughter was diagnosed with "Limited WG" because it was only in her sinus area, the minute it moved to her lungs they said she had full blown WG, but I'm with you Jack, WG is WG and less of it doesn't make it any better.

[Sangye]

When I was first dx'ed, my lungs were hemorrhaging, I needed a blood transfusion, 1,000 mg IV solumedrol and oxygen. I nearly died. They called it limited Wegs. At the time I wondered what "unlimited" Wegs would do.

[Nancy]

wow! I so agree talk about a Alfred Hitchcock moment of what next... The dogs thought is all due to you...Sangye...

[Sangye]

LOL so cute.

[jola57]

Awww, just adorable.
There is no such thing as limited Wegs, how can there be if it is a progressive disease. I think the correct term should be "beginning stage of a systemic disease". So next time you doc says "limited" educated him/her.