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[alhartzler]

Hi, I'm Angela. I was diagnosed with limited Wegener's in May of 2009. It began with a cold, which progressed to loss of hearing on the right, and eventually nasal bleeding/crusting, etc. I had sinus surgery and ear tubes placed, and was started on prednisone. Eventually I started methotrexate 20 mg per week, and prednisone was tapered off. I still have daily nose bleeds and crusting. My nasal symptoms are no worse, but certainly no better. My ENT says my right ear is in complete remission. What is worrisome to me is that over the last several months, I have begun to have joint pain that comes and goes. It varies between hands, elbows, shoulders, knees, and ankles/feet and toes. The most excruciating pain has been in my shoulders and feet/ankles. It sometimes feels like my shoulder is coming out of its socket, and is difficult to sleep. I take no pain medications, other than Aleve ocasionally. I recently had a parathyroid adenoma removed, which apparently was contributing to my chronically high calcium. I was hoping that some of the joint/muscle pain might be due to such a high calcium, but alas, the pain did not go away after the parathyroid was removed. So I guess it's the Wegener's. I see a rheumatologist, but she is not a Wegener's specialist. I am worried that the increasing joint pain is a sign that the disease is progressing systemically. I am not sure how to proceed. I am in a rigorous school program right now, and have 10 months until graduation, so I don't want to do anything that will make me more sick than I am by upsetting the balance. If there is such a thing with this disease??? Any advice or information on the subject would be appreciated. Thanks

[Psyborg]

Welcome to the board. It sure sounds like the Wegs is active for you. The sinus issues and pain seems to be a give away. I'm pretty new to this, but I didn't get the impression that someone could go into remission in a specific area but not others.

I don't know where you are in the country, but if you can get to a specialist or a vasculitis center I can't recommend it enough.

[alhartzler]

Thanks Bob,
Yeah I guess it sounds kind of ridiculous to say ear is in "remission" but nose isn't--- bottom line, NOT in remission. I guess I'm confused on the whole "limited" vs. "systemic" wegener's deal. My ENT said I have limited since no kidney involvement. But since I have joint pain/other symptoms, I do still have an active, systemic set of symptoms, right? Confusing. I appreciate your input. I am from the Dallas/Ft. Worth area, and I have no idea where to go to a "major" center, or if there is one in the Texas area. Do you happen to know? Thanks again for your thoughts. Much appreciated.

[Psyborg]

I don't know for sure. The big centers are Mayo, John's Hopkins, and Cleveland Clinic (With new one in Utah recently).

I also have limited wegeners for the same reason, no kidney involvement. But that doesn't mean much it's still a very serious disease. My doctor says she doesn't care for the limited tag.

[alhartzler]

I guess I don't care for the "Limited" tag either, gives one a false sense of security for sure. I think I will look into the Mayo. I read something about a new vasculitis center there. Do you have joint problems? If so, what do you take for it? And, what other meds do you take, if you don't mind sharing. I'm on 25 mg of methotrexate and bactrim ds currently. I increased the methotrexate dose a couple of months ago. Also folic acid of course. Thanks for your input
Angela

[Sangye]

Hi Angela, welcome to the group. This thread has info especially for you: http://www.wegeners-granulomatosis.c...need-know.html

Your ENT clearly has no idea what s/he is talking about, to say that your ear is in remission. That's a new one. Tell him/her that your ear happens to be attached to the rest of your body, that is clearly not in remission.

Migratory joint pain is a sign of active Wegs. You are right to think that the increasing severity indicates increasing disease activity.

The term "Limited" Wegs does more harm than good. It only indicates that the Wegs is not affecting your kidneys. So someone could be on a respirator in lung failure and they'd still call it limited. The thing is, there is nothing keeping the Wegs from affecting any part of the body at any time. It doesn't mean that will happen though. It's not like cancer that will inevitably spread.

Right now it looks like the Wegs is mainly affecting your sinuses and ears, with joint pain due to general inflammation (Wegs doesn't attack the joints and damage them). More widespread Wegs involvement can happen slowly or very quickly. It's very important to get set up with a skilled Wegs specialist and team of other specialists who sees tons of Weggies. The thread has info on how to do that.

You cannot wait with Wegs. I know you have plans for school but you won't be able to complete them if you don't treat this properly.