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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.

[alhartzler]

Hi Sangye,
Thanks for your info. So you think the increasing joint pain should warrant seeking a wegener's specialist? I just didn't know if this was something to be expected and live with, or should require a change in treatment. I have been debating on whether or not my rheumatologist is knowledgable enough about Weg's to treat me. She seems to leave alot up to me, and frankly all the information is confusing, somewhat contradictory, and overwhelming. I will visit the thread you suggested, and I really appreciate your input. What do you think they might do about increasing joint pain, if all other symptoms remain the same (sinuses, no kidney involvment, no lung involvement, etc) Just out of curiosity, since you are obviously very well versed in Wegs. Any help appreciated.
Angela

[drz]

My Wegener's started with mild nasal stuff, a few months later I got the migrating joint pain which gradually became worse, then more fatigue and weight loss, then it began moving rapidly with blood in urine, scerlitis of eye, kidney involvement that were failing quickly, total loss of hearing in right ear, and then serious bleeding in lung that almost killed me. All these last symptoms happened in a matter of days after smoldering away for many months.

You can't count on Wegener's disease to be nice and wait till it is more convenient for you to get treatment. It will do what ever it does with no warning and regard for your health. If you get proper treatment early you can usually avoid permanent damage like kidney damage, lung damage, blindness, hearing loss and many other unpleasant things you want to avoid if possible. Like the others said get to a specialist ASAP!

[alhartzler]

Yes, I guess it sounds kind of ridiculous to want to put a disease on "hold" for the moment. I was struggling with whether it meant it was progressing, or just thinking it was an expected part of the disease, and not necessarily that things were getting worse, if that makes sense. I am going to actively seek a specialist now. Especially after hearing some of the input I've received here. Thanks for sharing your knowledge and experience.
Angela

[Psyborg]

Angela,

I totally understand where you are coming from...it's a very confusing disease, and a bit scary when you start reading up on it. This forum helped me a great deal, as did getting with a specialist at the Cleveland Clinic. The Mayo clinic is a great hospital from what other's on the forum have said as well so I don't think you can go wrong heading up. I think it sounds like you were already concerned with the lack of knowledge by your current doctors (and trust me that seems to be pretty common with this fairly uncommon condition), go with your gut and get into a specialist as soon as you can. It is quite possible go get that kidney involvement later if you don't get the proper treatment now.