Alt diagnosis

[Tahoe]

My wife has been diagnosed with Wegeners but her ANCA results are inconsistent, leading our rheum to say the only other cause is a cocaine addiction which isn't the case. Anyone out there have this experience? Is there an alternative diagnosis we don't know about?

[Pete]

I was diagnosed by elimination as well. When the docs said I had wegs, I asked if they had another diagnosis. When they said no, I asked how they would verify it. They said open lung biopsy. We decided to treat for wegs and see if I improved. When I did get better, we agreed that I have wegs. My meds at the time were 50 mg cytoxan 3x/day, 60 mg prednisone/day, and bactrim daily.

After a flare almost two years ago, I've steadily gotten better - to the point where I feel as well as I did before I got sick.

The best advice I've gotten about dealing with wegs is, "Take your meds as directed and live the best life you can." I've done this. I would also find a doctor who specializes in Vasculitis.

Good luck and better health.

[gilders]

ANCA results are not reliable to confirm Wegener's or a flare/relapse. It is just a good indicator. They only way to get a definitive diagnosis is to have a biopsy of the effected organ, although nasal biopsies aren't that accurate as they often come back inconclusive.
There's quite a few people who have been diagnosed without a biopsy due to their symptoms and many more who don't have biopsies at the start of a flare, but for complete peace of mind a biopsy is best.

[Dirty Don]

Welcome Tahoe, glad you found us. The initial dxes are quite often wrong if one bases dx on ANCA results solely. As Pete and others have had, it can be done w/o invasion, but to be sure, a surgery is necessary. None of them are completely bad, I had lung dx and tho I was out cold, it was only a soreness that was left under my right arm...and a nice incision scar! LOL! Cocaine addiction is thrown around loosely as if a doc has ever seen a coke addict's nose destruction...pictures are their usual source. That kind of dx comes from lack of experience with the disease and a cultural bias that docs don't like to admit. Way it is...got a bad sinus, you're a coke addict or you have WG! What?? Ultimately, it's better to start treatment than ignore what might happen...can always wean off the drugs if they don't work...just takes patience, etc. As far as an alternative dx...sure, AIs are closely related and one appears as another until dxes are finalized and protocols are worked out. Best to you and your wife...be patient, strong, and have lots of proactive days!

[Tahoe]

Thanks for the quick replies. Seems like this Community really cares about each other .
My wife has had all of the typical exams and tests and luckily no organ damage yet , So we're going with the Wegener's diagnosis because of her inflammation and collapsed Septum.
On prednisone and mtx hoping to get the inflammation Under control . from what I am reading, perhaps we should consider a trip to a Vascuitis center. Thanks again.

[annekat]

Thanks for the quick replies. Seems like this Community really cares about each other .
My wife has had all of the typical exams and tests and luckily no organ damage yet , So we're going with the Wegener's diagnosis because of her inflammation and collapsed Septum.
On prednisone and mtx hoping to get the inflammation Under control . from what I am reading, perhaps we should consider a trip to a Vascuitis center. Thanks again. Welcome to the forum. You are right about the level of mutual caring on here. It is just a great forum, and I can't say enough good about it. The collapsed septum certainly sounds like Wegs, although there are a few other conditions, besides cocaine abuse, that can cause it. Look for the recent thread on How Many of Us Have Saddle Nose for some discussion of that. Wegs seems very likely, though. If your name, Tahoe, means you are in that part of California or Nevada, then the closest well-known vasculitis centers are in San Francisco and Salt Lake City. Check this link for a list of specialists that includes the doctors at these two centers:
VF Medical Consultants (http://www.vasculitisfoundation.org/mcm_resources/medical-consultants/)

[Jaha]

Welcome and all the best to your wife and you for getting her the best care.