Hello

[Cathywithwegs]

I am totally new to this forum and am a little nervous about posting. I was diagnosed with Wegeners in June of 2013. I started out with an ear ache. Went to urgent care, got an antibiotic and things only got worse. Antibiotics were changed 3 times and finally I got into a ENT doctor who told me that I had the worst ear infection he had seen in 20 years. His treatment was to put tubes in my ears which came out in a week. He then proceeded to put t-tubes in which also came out in a week and by then I had lost my hearing also. My family doctor recommended I try a different ENT. I went there and he looked in my ears and at my tests and said to go to a rheumatologist ASAP. Went to the rheumatologist and he ordered all kinds of tests and within a week it was confirmed that I had wegeners. He put me on prednisone and methatrexate. I had been doing really well until Christmas when I started out with a cough. Went to urgent care twice and kept getting worse. Went back to rheumatologist and he ordered chest x-Ray and ct scan. Waiting on blood test to see if the wegeners is involved. I am actually sicker now than when I first was diagnosed. Is this what you would call a flare? I know of no one to talk to about this disease as hardly anyone has heard of it, even some of the doctors at urgent care. Anyway, thanks for reading this and hopefully I can gain some knowledge about this disease.

[Pete]

Hi Cathy,

Welcome to the forum. We're glad you found us, but sorry you needed to. Feel free to ask questions, share experiences, or just blow off steam here. We all do it, and there's usually someone on here 24/7/365 as there are subscribers from all over the world.

It sure seems like you're in a flare, if the disease was ever fully under control with methotrexate and prednisone. At the moment, your best bet for care is your rheumatologist - if he/she has experience treating wegs. If not, you may want to have your local rheumy consult with one of the vasculitis specialists listed at this link: VF Medical Consultants (http://www.vasculitisfoundation.org/mcm_resources/medical-consultants/) They will be up-to-date on the latest treatment protocols and will be able to better help you get the disease under control. Here's a link to an article about treating wegs that you and your docs may find interesting: Maintenance of Remission in ANCA-Associate Vasculitis :: Article - The Rheumatologist (http://www.the-rheumatologist.org/details/article/2544111/Maintenance_of_Remission_in_ANCA-Associate_Vasculitis.html)

Urgent care docs generally don't know anything about wegs. Do you have a family doctor? If so, you can start educating him/her about wegs as you learn more - at least steer him/her to some additional resources. My family doc doesn't know a whole lot about wegs, but he knows what to look out for. I see him about every four months and see my rheumy about every four months as well, so I'm rarely more than two months between seeing a doc. I also have monthly labs done (complete blood count, metabolic panel, C-reactive protein, sedimentation rate, and urinalysis) that give early warnings if anything is amiss.

Keep in touch and let us know how you're doing.

[Dirty Don]

Welcome Cathy...good place to be now for you...lots of info and caring and understanding here...as well as experience! Sheesh! Nerves are part of the program as such...I have never been so 'paranoid' about stuff concerning my health. Pete's suggestion to get in contact w/ WG experienced docs is correct...at least have your docs consult with them. If they balk, make the connections yourself...sometimes egos get in the way & reading out of book of protocols doesn't cut it. Sounds as if you are flaring...symptoms aren't always the same as in your initial dx, but very recognizable with lethargy, ill feeling in general, sometimes original symptoms come back also. Please keep talking on here...vent, share, ask...do what is necessary for you to feel better! Best to you!

[MikeG-2012]

Welcome Cathy!

With the cough, I would be concerned that the disease has affected your lungs. Find a good Rheumatologist or use the resource that Pete posted to find a Wegeners doc ASAP!

I hope you are not flaring up, but you now have to be aware that anything out of your normal health that involves you nose, ears, joints, sinuses, kidneys and/or lungs could all be potential flare ups. You don't have to be paranoid about it, just be acutely aware of what your body is telling YOU!

Hope you start feeling better soon!

MikeG-2012

[Dirty Don]

Fine line between 'acute awareness' and paranoia sometimes...cooooofffffffeeeeeeeee! Oh, pot's cold...sheesh...

[windchime]

Hi Cathy,

No need to be nervous although I was too when I did my intro. ENT's are the bane of our existence on this site. Some have really good ones, but I think they've searched them out. Mine sucks. The cough is concerning as that is a lung presentation for Wegs. I have it in the lungs and had a dry cough for a year before I got someone to take it seriously. Partly my fault since I SHOULD have pursued it. I know better now. Any time your symptoms change is a time for you to be concerned and to check in with your Rheumy. Since these sometimes tend to escalate quickly don't delay. I'm glad that you did see your doc and hope that your results are all good news. Maybe just a tweak in the meds you are getting. Are you still on the prednisone? Sometimes if we taper too quickly symptoms appear. Happened to me recently and I ended up in the ER.

Feel free to contribute, vent, share and research. There is usually someone on since this is a world wide site. Please keep us posted with your results and how you're feeling.

[annekat]

Hi, Cathy, and welcome! No need to be nervous, just keep posting! Your case sounds so typical in some ways. A severe, antibiotic-resistant ear infection at the onset of the initial Wegs flare is pretty common on here. I think my ENT thought the same about mine; he said he'd seen one other as bad, but didn't think at the time to suspect Wegs. A whole lot later, when he finally dx'ed my Wegs with a nasal biopsy, he said he'd seen 3 people with Wegs. I have to wonder if one of them was the same guy who had the other super-duper ear infection, or as my ENT said "a really weird bug." My Wegs was diagnosed when it went into my lungs and I was much sicker than ever before.

The coughing suddenly presenting itself is a cause for concern, whether it's a flare, and Wegs is spreading to your lungs, or whether there's some other explanation like a cold, or just stuff dripping from your sinuses and causing a cough as it collects in your bronchii. That last happens to me a lot, although my lungs are now free of Wegs, but it can sound so awful that people think my lungs are in bad shape, until I cough a bit of something up and all becomes clear. But Wegs could be presenting in your lungs even though you are on the meds. I wonder if it's possible that you are not on a high enough dose of methotrexate. I'm on only 15mg./wk, which is a pretty low dose, but I'm also not currently flaring. Most people who are newly treated get a higher dose than that, I think, according to their weight. It is also possible that you need a stronger drug. People's suggestions about connecting with specialists are good ones.

I did lose a lot of my hearing, too, and wear aids. But some people get theirs back, and you may, too.

Keep us posted!

[mishb]

Hi Cathy and Welcome to the forum.

I think it's a little scary the first time you post on here, but you will soon find yourself commenting and sharing, quite regularly :thumbsup:

I'm really sorry, but I agree with the others, a flare is on top of you at the moment.
I hope they can get it under control very quickly.

I look forward to hearing more from you.

Keep your chin up and ........

[Lilly]

Hi Cathy, so glad u found this site. It has so many great people on here, and so much information. Plus, everyone understands and u can b totally honest and it seems that someone else has been there and can give u advice. I am sorry u have been diagnosed with wegeners, but also glad they found it finally. I had many tumors in my lungs when I was first diagnosed, they did a biopsy on one, and determined it was not cancer, so that pointed to wegeners with everything else. After very aggressive treatment, all but one shrunk up to little spots. One just stays there, always unchanged so far for 23 years. I hope that u will find peace in knowledge of this crazy disease. Learn as much as u can, and listen to your body and don't b afraid to be up front with ur doctors. This AWSOME website helps u learn a lot and u can pour your heart out and people care here. Keep us posted! Take care, and so glad to meet you! :)

[Alysia]

Hi Cathy,
I admit it was scary to post here for the first time :wink1:
but then coming all the amazing friends here :love: and you are no longer alone and frightened, and you can ask whatever you want and can trust us. this place it the best "WG doc" on the globe.
it must be also scary to feel like you are feeling now, but now you are in good hands. you will be ok.
please continue to share :hug2:

[Cathywithwegs]

Thanks everyone for the information and kind words. I have never been a person to make waves or ask a lot of questions when at the doctors office. I feel intimidated by doctors. I know that I am going to have to change my attitude and be more aggressive about my care. I feel so blessed to have found this forum!

[annekat]

Thanks everyone for the information and kind words. I have never been a person to make waves or ask a lot of questions when at the doctors office. I feel intimidated by doctors. I know that I am going to have to change my attitude and be more aggressive about my care. I feel so blessed to have found this forum!

Cathy, I find that it is very difficult to make waves and ask questions at doctors' offices! I don't find doctors in general to be very responsive to that approach! They don't have the time, or won't take it. There are exceptions, of course. Based on what I've read on here and on Facebook vasculitis groups, the closer you can get to having a real Wegs or vasculitis specialist, the more time and attention they will give to you. Otherwise, if you are stuck with a hard-to-question doc for the time being, here on the forum is definitely the place to ask all those questions and make those waves!