?Limited Wegeners

[Sangye]

Jolanta, I wouldn't characterize Wegs as a progressive disease. Just like there's no guarantee that it will stay limited to one area, there's also no guarantee that it will progress.

[Jack]

I agree with Sangye, there is good news out there too with quite a few in long term remission. However, with the current medical knowledge the threat of relapse is always there.

[Sangye]

Yes, but a relapse (or even many relapses) aren't progressive disease. Progressive diseases are ones like MS, RA or ALS (Lou Gehrig's disease)--diseases in which the progression of damage is certain and is part of the actual pathology of the condition.

[Jack]

Wegener's has its good points! It is not progressive.

[JanW]

I was just going to come on and say what Sangye says. When people say it's a progressive disease, I always correct them and say that it is far from certain that my condition will ever be worse that it is today.

I know that there is a ton of back-and-forth about limited/not limited, but I don't think that doctors should ever say that people are at the beginning stage of WG, because that is assuming that docs (or we) have any idea of what course that disease might take. For me, windpipe scarring could be the very worst of it -- I may never progress to kidney disease or bleeding lungs and could in fact have long periods of dormancy.

[Sangye]

Exactly. And even increased windpipe scarring is not necessarily due to Wegs, but to the fact that scar tissue likes to add to itself.

[elephant]

My two cents...Wegeners has a mind of it's own. I kinda worry that it will get my transplanted kidney, and other organs. I think we all should be vigilant and careful, this disease has a way of sneaking back somehow. I'm not talking about being obsessive, but if you know something is not right, then it isn't....need to listen to your gut and have your gut tell your doctor.

[jola57]

I bow to your collective wisdom, but just think, even tough it is not fast, every time we flare, more or different areas may be involved.

[Jack]

I fully understand what you are getting at there. There is no doubt that although I have both ups and downs, the general trend is down.
But that is me now and would not apply to my condition 20 years ago when things were going well and if anything I was on an upward curve. For some people, this improvement or at least stability is near permanent.

[Sangye]

Repeated flares don't make it progressive, even if more damage is done each time. I'm being a stickler about this because I really don't want newly dx'ed thinking they've got a progressive disease. Wegs is not in that category.