Not sure what to think

[annekat]

Tom, true about the lungs presenting as pneumonia; luckily for me it was only a couple of months before I got the CT scan that showed "cavitary lesions" and even though they sent me home with antibiotics, the doc there at the hospital was pretty sure I had WG. They just left it up to my regular docs to determine that, since I wasn't in bad enough shape to keep me there, and was pushing to go home. So, no, I don't have COPD or need to use oxygen, but I know there are some on here who do, besides you. My lungs are OK and have taken a back seat to sinus destruction. It does seem a little weird that they don't think you have sinus involvement even though you feel you've had all kinds of those issues in the last 8 years! I also can't smell, but I can taste, though not as well as before. And I can breathe well through my nose, and could even before the septum was destroyed, unless it was temporarily plugged, which could be relieved with a saline rinse. In any case, if you do have sinus involvement, it seems likely you will avoid saddle nose since you are under treatment and they haven't seen anything like a perforated septum in there. Everyone is different!

I hope the same for scottgirl. I hope she gets with a more experienced doc who will not tell her that symptoms only in the sinuses cannot be Wegs. We here know differently. Many of us on here, including me, have started with sinus issues that docs ignored or treated as everyday sinus issues and later turned out to be Wegs. I hope that our discussion of our own cases here will offer her some insights.

[kattip]

Hi!
Just saw your post as I recently signed on to this site. My 32 year old daughter was diagnosed in November with Wegeners. She had trouble with sinus infections and was treated with an antibiotic and prednisone. She got over the back to back sinus infections but then had eye trouble. The eyes were red and the doctor told her she had irritation from her contacts. The redness got progressively worse and she was finally referred to an eye specialist. He diagnosed her with scleritis and did blood work. Her ANCA was done and the "C" part came back very high. She was told she had Wegeners. It involves only her eyes, throat, and sinuses so the rheumatologist labeled it "Limited Wegeners". Your symptoms are similar to hers so inquire about "limited" Wegeners.
Good luck to you and hope you feel better.

[LisaT]

Hi my name is Kate and I am 22 years old. I have had sinus issues for some time. I used to snore really badly when I was younger so my parents took me to an ENT to get my adenoids removed and that seemed to help. I also used to have frequent ear infections and had tubes put in multiple times. I now have chronic cough and I have to breathe through my mouth because it feels like I can't breathe through my nose because it seems to always be decongested. I'm constantly clear my throat. I finally went to my ENT again and he had me do blood work and I tested positive for ANCA and so I was referred to a rheumatologist. At the doctor she blood tested me again and the only thing that was high was my plt count. She tested me for everything imaginable and nothing else seems to be involved. She says I don't have Wegener's, but what else could it be? I want to be able to breathe again. It sucks having these symptoms. She says she doesn't think I have it because it is all in my sinuses and nothing else is involved. I used neilmed 2 times a day and that seems to be helping, but I don't know what else to do. I was wondering if anyone else have these symptoms and could offer me insight? Thanks!

hi, Kate, your symptoms are similar to those I had for five or six years before a third ENT finally pointed the finger at GPA. Up until that point they'd scoped my nose and throat and seen some non-specific inflammation but purported to rule out GPA, I'm not sure why. My diagnosis is still not 100 percent because I'm anca-negative, but my point as it relates to your situation is this: as with other autoimmune conditions, GPA symptoms can smoulder away making you miserable for a good few years before test results confirm the diagnosis. Once my tentative diagnosis was made and I was started on prednisone and imuran, the throat issues and nasal inflammation I'd had for years started improving drastically. So I now feel that it doesn't really matter what label they put on me and my symptoms, provided they can treat me! Maybe you can get another opinion or ask if it's possible to try treating the symptoms regardless of what they want to call it? The chronic cough and hoarseness and phlegm turned into a couple of very frightening near-choking episodes for me before it was determined that I had subglottic stenosis (narrowed airway due to inflammation); trust me, you do not want to go there. Have they scoped down your throat and taken a look at what is going on? If not please try to get into another ENT for a second opinion. It took me years and three ENTs to get a semi-answer and proper treatment. Good luck and I hope you get some answers soon.

[Pete]

I was diagnosed by a process of elimination that landed on GPA/Wegs. When I asked the doc what was needed to confirm diagnosis, he said open lung biopsy (and another week in hospital). His plan was to treat me for GPA and see what happened. I responded well to treatment (ctx, pred, and bactrim), and am now doing well.

[LisaT]

Pete, it's always so good to hear the success stories. Hope your remission lasts and lasts...

[Pete]

Pete, it's always so good to hear the success stories. Hope your remission lasts and lasts...

Thanks, Lisa. I am very blessed. I hope every Weggie gets a good, long remission. Finding a cause and cure for our dumb disease would be wonderful beyond imagination!