Not sure what to think

[scottgirl21]

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!

[mrtmeo]

My mom is p-anca positive, finally dx'd with MPA (Microscopic Polyangiitis)
In the beginning, she had a constant feeling her nose and ears were plugged.
Several ENT's scoped her sinus and did CT scans.
One scan show very mild inflammation, but no one had any treatment for it.
There are limitted forms of vasculitis and it shouldn't be discounted just because an organ is not involved, yet.
Try to find a good rheumatologist and an ENT familiar with vasculitis.
You can contact the Vasculitis Foundation for possible drs in your area here
Contact Us (http://www.vasculitisfoundation.org/about/contact/)

[BookNut]

Welcome! I have similar symptoms and was initially diagnosed with Wegeners by a rheumatologist. She prescribed Imuran...but I was not about to take an immune suppressant till I got at least one other opinion. I actually went to an ENT AND a pulmonologist recommended by my allergist. Both have ruled out Wegeners. Instead I have been diagnosed with chronic sinusitis and now "asthma variant"...likely cough variant asthma, and bronchiectasis. I have had serious asthma exacerbations over the last 4years, getting to the point that my prednisone use has become of great concern to me. I am now receiving Xolair shots monthly and they seem to be reducing the number of asthma exacerbations. I wonder if you have been to an allergist yet?. Between an allergist and a rheumatologist, they should be able to determine if you have an immune system that is overactive or underactive.

Good luck, and welcome to the group. Even if you do not have Wegeners, you will find much here of interest as many of the symptoms are similar.

[vdub]

I would have to agree with booknut. If wegs has specifically been brought to your doctor's attention and she has ruled it out, then that is most likely the case. You could ask her why she ruled it out -- she must have some specific reason other than no involvement elsewhere. It would be really great if you don't have it. You could always get a 2nd opinion, though, and if you are still concerned, maybe you should. If you really think its wegs, then get a 2nd opinion from a rheumatologist versus an ENT.

[drz]

A history of ear infections and sinus problems may precede getting Wegs later on according to my Weg expert at Mayo. Why is unknown but it is also known that a Weg diagnosis often follows some other infections although it is as of yet unknown why this happens.

A negative ANCA test doesn't rule out Wegs since many people have this happen to them and still end up with a Weg diagnosis that is often confirmed later by a biopsy of some body part where Wegs is active. A Weg expert can review your history, symptoms, lab work etc and give you a better opinion on what is happening to you.

[annekat]

From personal experience and reading of others', I have to disagree with your doctor who said you couldn't have WG because you only have involvement in your sinuses and nowhere else. I think the sinuses are the most common area of involvement and quite a few of us only have it there. I eventually got it in my lungs, but for a long time it was just the sinuses, and it went undiagnosed because so many people in the population do have sinus issues without having WG. This of course does not mean that you have it, and I hope you don't, but I just think that was an erroneous statement your doc made. If I read it right, it was a rheumatologist who said that, and not all of them know a whole lot about WG. To see lists of docs considered specialists in WG or other vasculitis, or docs recommended by patients in specific locales, look at these two sites: VF Medical Consultants (http://www.vasculitisfoundation.org/mcm_resources/medical-consultants/) and Vasculitis Patient Advocacy Network (http://www.vasculitispan.org/) .

I agree with the others about getting a second opinion from another rheumy and seeing an allergist as well. But I wouldn't discount the value of an ENT, maybe one who would investigate further before just sending you off to a rheumy. If he thought you might have WG, he might have considered doing a nasal biopsy for evidence of WG; those results may be inconclusive, but in my case it proved my diagnosis. That could be something for later after conferring with a more experienced rheumy. My ENT also deals with allergies and has an allergy department in his office suite with other ENTs and a hearing care clinic as well. This can be explored from a number of angles. In any case, welcome to the forum, and I hope you don't end up needing us, by virtue of not having WG, though some in that case have never wanted to leave, once here! It is a great group of people; there are no better anywhere.

[Donna-from-Philly]

I would add my concern with the others. My blood work didn't indicate Wegener's at first. The doctors at first weren't treating me for it. I kept getting sicker. I changed doctors after 6 months and they treated me properly for Wegener's. Please use this forum for information.

[Tom]

Hello scottgirl21,
I would have keep pushing for resolution positively to rule out any doubt that Wegs, does or doesn't exist!
I say this because I had prior issues before my dx.
Leading up to my wegs dx, I had suffered with sinus problems for 2 or more years and it was chronic! I was told that I had sinuitis and had seeked out treatment no more than a couple times and tried to heal myself! I eventually had sinus surgery with minimal relief. This was in Dec. 2009
In late 2010 I was dx with COPD was coughing up blood. A scope found a growth in the airway of my right lung and could not be removed in office like a polyp. I ended up having 2 lobes of right lung removed 2 weeks later! Still no suspician of Wegeners but was told that health problems were expected from a radical cancer surgery in 2006.
They told me the tumor removed with the lung was a hematora tumor, non cancerous. <sp>
In Febuary, 2011 I was hospitalized for pneumonia, Fourteen days in the hospital! In April 2011 I was hospitalized with a rash on my legs and ER Dr said it looked like vasculitis and I had pneumonia symptoms! Thats where my journey took off. They did a kidney biopsy and found it to be wegeners. I began my regiment of standard meds, Cytoxun, Pred, etc.! At a later appointment, I asked the rheumatologist how it is determined if I am in remission or relapsing? He said there are no real standards as far as blood test go, but they can look at some markers such as the white blood cell count being abnormal. He did tell me to watch for symptoms like I had at the start and told me that they could test a random person on the street and they can test positive for ANCA but not have Wegs but would raise a red flag for other problems! Also you can test negetive for ANCA and that person could be afflicted! ANCA one way to watch for remission or relapse!
In other words, I went to him the year before with swollen, sore joints. The swelling went down by the time I got to my appointment date and he could not treat for RA as my family Dr tested a high RA factor and my cancer history prohibited him from treating for RA since the RA treatment involves some cancer drugs and I had my life time limit and had to have special clearance to be treated, Albeit, there was no choice but to treat!
So to sum up, I made complaints over a 5 year period of aches and pains and my oncologist felt it was a result of life saving surgery for my cancer! He apologized as well as other Drs I had seen over the years that they didnt find it sooner and that all my complaints with the total Wegs flare with the purpura, made things fall together like a giant puzzle!
I was also told that insurance companies didnt like to pay for a vasculitis test because there was blood test were simply to unreliable to make the diognosis and a biopsy was the most effective test but was more costly and so they didnt like to pay for the test!
I guess what I would suggest is to keep making the complaints to your Dr! If you have a family Dr, keep them in the know and they can get you into specialist faster than a normal waiting period!
I don't fault the Drs for not finding mine sooner, but I hate that I lost most of my lung and my lungs were shot by this point any way but they had to get the airway opened again. On background, I went from severe stage COPD to very severe stage with in 2 weeks of waiting for the kidney biopsy and the decision on the type of treatment for me as I was a conundrum! BTW, it did get my kidneys and the nephro doesnt know why they are functioning normally but I think its the pred and I know from attempts to taper, the pred is helping my lungs and I cant get below 20 mg and the RA thinks I may never get off of them! Some people dont I guess.
Stay vigilant and good luck!
Its just that I hate taking all these meds and still cant breathe like I want and recenty was told that working was done for me and any exercise should be done by walking as comfortable to me !
Have them tell you definitively that you do not have WEGENERS or vasculitis of any form! Your symptoms are not unlike mine or others I have seen posting on here or other sites!
Your symptoms sound like mine in the start of all of this and when it flared,it escalated fast!

[annekat]

Tom, the progression of my Wegs was similar to yours, with the couple of years of recurrent sinus stuff that seemed routine to the ENT. A little joint pain here and there but no connection made between the two. Until things finally escalated in my lungs, and like you said, fast, to the point where I was looked at more seriously and able to get a dx. My lung stuff was not as bad as yours and I was only in there overnight for a CT scan and some other tests that they figured they'd do all at once, hence the hospital stay at all. But the lungs were bad enough that it seemed like at least pneumonia, so they sent me home with antibiotics and pred and the suggestion that it could be Wegs and I needed to follow through with my regular docs. Things would have gotten a lot worse, fast, without a dx and treatment! My dx was by nasal biopsy in my ENT's office right after I showed him the saddle nose that had just appeared (!) and a swollen parotid gland. As soon as the dx came in, I was started on CTX, high dose pred, and Bactrim, and it worked well. My lungs don't have their full former function, but are reasonably OK. I can get around and do most things. Now on MTX, lower dose pred, and Bactrim, just holding out for the day I might be able to get off those, but not really expecting to, completely. Interesting how all our stories are a little different yet the same in many ways.

[Tom]

Good morning Anne and all,
I agree Anne, it seems like we can have different roads to get to the diagnosis of the Wegs, yet we all have the same results when it comes right down to it!

I'm told that the Wegeners in the lungs presents as pneumonia and that is why the real problem, Wegs is not detected until things get worse and they do!

I don't have any signs of saddle nose that Im aware of. My ENT says there isno signof Wegs in the sinus, but I beg to differ since I cant smell or taste much of anything for the last 8 years or so! I'm constantly stuffed up and doing pursed lip breathing is essential for getting good air to your lungs but its near impossible for me! I can do the NEILlMED and saline sprays but that's good for only 30 minutes or so!
I'm at the point where I would just like to be rid of the pred because of the need to take another med to combat the adverse effects of it!

I did have to smile at your comment about "full former function" of the lungs! I kept telling myself that I was not in denial about the whole process but there are times while at rest I fell like I could take the 02 off and go for a jog! I don't however! I come back to reality when I might slip outside with the dog without the 02 with me.
Are your lung problems COPD as a result of the wegs? The COPD is progressive and unpredictable on its progression in each individual!

I had hoped that since my COPD was Wegeners associated, that I could stop the progression when in the back of my mind, I knew exactly what COPD is and does because my mom died from it, as well as others I have known!
I used to get around and do almost all the things I wanted to but I find I can do less and less and Im at the point that the Pulmo says if I want exercise, to walk but "No more work!" He says I've progressed that far and he fears stroke or heart attack if I try to lift things or exert myself!
I'm hoping that scottgirl gets some definite answers, one way or the other and the hope for good news!

[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. :thumbsup: Hope your remission lasts and lasts...

[Pete]

Pete, it's always so good to hear the success stories. :thumbsup: 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!