Symptoms similar to middle ear infection?

[Rodger]

I was wondering if anyone else in the Forum has had or gets symptoms like a middle ear infection. Since August I have had fluid in one or both ears, but no positive lab cultures pointing to anything specific. My ENT, who has been treating my WG since the beginning, has inserted tubes for drainage. Also she has tried Levaquin and now back to my old friend Cipro.

Ironically my sinus crusting has abated somewhat during this period. However my last rheumy visit and labs showed elevated ANCA, so he switched me back to Cytoxan from Cellcept. I've been back on Cytoxan and Cipro together for a week now and my fatigue and nausea has increased.

I'd appreciate hearing about any experiences with WG and the middle ear.

[Jack]

Hi.
It seems like I am holding my hand up to every symptom mentioned on the forum, but I do have hearing problems. Since having Wegener's, I've developed a problem with fluid in my ears which causes partial deafness. I also have Tinnitus which can be quite bad at times.
I've been checked out by ENT but it looks like I just have to live with it.

[elephant]

The tinnitus is driving me crazy! Ring, Ring and sometimes it is so loud, I wonder if I will sleep at night! I had this for many years but it has gotten worse in the last 8 weeks or so. I think it was the decreased prednisone that brought it on. Yes, I am annoyed!

[Sangye]

I don't really have Wegs involvement in my ears, but I do notice that when the Wegs is really flaring (or when I'm outpacing the meds) I get fluid build-up in my ears. Not enough to do anything about it. I suspect it may be a sign of a flare for you. Do you have a Wegs specialist?

[elephant]

I see Carol Langford at the Cleveland Clinic. I will be calling my local Rheumy next week. Then will decided what route to take. I am not feeling good today. Stomach is bothering me today. I have a feeling it is a flare and need to really communicate this to my local Rheumy. I really need to have Carol Langford's opinion too.

[Sangye]

Oh, I'm so sorry you're not feeling good, Elephant! I'm glad you're getting Dr Langford's input. Trust your gut-- you know better than any of them. (I know you know that!)