Not very happy about my docs visit

[jeriorleans]

A.J. also had nodules. The last CT scan, as most of you know, two had disappeared and one had shrunk in half. What are the signs to watch for to make sure they are not coming back?

[onatreetop]

I had seven small nodules in the right lung started a low dose of cytx 50mg and high pred 60mgs orally and within three months nodules no more or un able to see. The high pred was only two weeks then tapered thank god!! I was off the wall now that I look back at myself then. Good luck and know matter what happens they can treat this thing they call WG!! They just need to find the right cocktail for you!!

[elephant]

I had no signs/symptoms that I had a lung nodule. Just happened to have a drug reaction and that led to a x-ray and CT of lungs. That's why WG is sneaky.....tip...toe

[onatreetop]

I only had very faintly different labs that lead to more test then the catscan with contrast that fould the nodules. Stumb fall trip boom WG.

[Sangye]

Yup-- no signs/symptoms that my lungs were getting worse. I didn't start out with nodules, "only" massive lung hemorrhaging. I didn't develop nodules until about 2.5 yrs into it.

[JanW]

It should also be said that lung nodules can be idiopathic (no known cause). Not every nodule means WG, lung disease, etc., etc. It's very common to discover in the course of a lung CT.

[Sangye]

In someone without Wegs, yes. But nodules in a Weggie? I don't think any Wegs specialist would accept that it could be idiopathic.

[JanW]

I wasn't clear. I meant that nodules do not mean definitely diagnose WG or mean that someone has WG with no other symptoms. Of course my one nodule -- shrunk now but visible on last CT scan (and it was miniscule then) was categorized as WG afer I was diagnosed a couple of weeks ago but before it was considered idiopathic. Even the ENTsays that the SS could be considered idiopathic -- and that there is in fact a condition in middle aged women called idiopathic middle aged SS that is well documented -- but considering that the saddle nose is a manifestation of WG (and obviously my lab work is as well), we will call it all caused by WG for the "simplest, most elegant solution" - Occam's razor at work.

[Jack]

I put all my symptoms down to Wegener's or side effects of drugs which means that I have come through the past 25 years without even so much as a cold!

[Sangye]

Yeah, I understood what you meant!

In holistic health care, we use the word "idiopathic" but don't really believe anything is idiopathic. Everything has a cause. We prefer "_____ of unknown origin." We use the term "idiopathic" in communications with the medical profession (eg idiopathic scoliosis) or when documenting diagnoses.