Hearing Issues

[MaxD]

I've responded well so far to my Rituximab treatments, now at 15mg Prednisone and falling by 2.5mg every two weeks. The only symptom that bothers me is my eustachian tube dysfunction. Often when I swallow, my ears "open up" (for lack of a better description) and the sounds of my breathing become really loud and dominant. So then I have to snort air through my nose and that brings the hearing back to normal. Except, it's sometimes too low and I have difficulty hearing well. So then I have to swallow and repeat until hearing is acceptable. As you can imagine, this can be most annoying!

Dr Lebovics said this was due to eustachian tube dysfunction and said I might need to have tubes placed if it gets worse as the prednisone is tapered further. Btw, the problem hasn't changed since I was on high doses of prednisone and may have improved slowly after the Rituximab treatments 3 months back.

Has anyone else had a similar experience? Any recommendations on what to do? Might tubes help? Oh, and I also have ringing in both ears.

Thanks for any advice, pointers, ...!

Oh, and by the way, Drs Spiera and Lebovics are coauthors on a forthcoming research study that found Rituximab to be a more effective treatment *specifically* for sinus problems related to GPA. A previous study had found that it is at least as effective in inducing remission.

[NikkiNicole]

How strange! I was just logging on to ask if anyone had experienced Eustachian Tube Dysfunction!!! I had tubes placed in my ears in August 2012, they came out just under a year later and now ... I have trouble with my ears again. It is exactly as you describe, I breathe in, one side shuts and I hear my breathing and heartbeat, etc. I'd gone to the ENT before and he was like "Your ears are fine!" BUt just now I got an email from my general doc who said my Eustachian tube dysfunction must be acting up. I asked why it didn't show in my health conditions list and she stated it was part of Wegener's.
Is it? Has anyone else had this besides us?!
I've been having increased sinus issues and crap but I recently fell out of a very strict clean eating regimen and think that is related to my symptoms returning. I am hoping a return to how I ate before will help. However, the ears have always been a problem even with the clean eating. It's just getting worse and worse now and I can't take it. My job relies on proper hearing!

[jvilner]

Ear issues are my main WG problem. If not for tubes and imuran I would have glue ear. Without tubes my ears fill with fluid. My dr says the same thing. Hearing tests are good enough for him even though I disagree with him. I have tinnitus as well. They all tell me my ears went thru a lot and I have to get used to my new hearing and be happy that I don't have any other organ imvolvement. It's hard for me to accept. I don't seem to be a candidate for hearing aid as of yet.

[Bing505z]

Its weird that I just replied to you thread just a minute ago, and now I see this one. Weird, you guys have the same thing as I do. I do hear the breathing etc.. and sometimes normal level sounds seem extremely louder to the point I sometimes have to plug my ear. Fourth of July was a mf.

[jvilner]

I walk around with cotton balls. It helps diffuse sounds and makes it easier to hear depending on the sound or even the room I'm in. Wind is the worst!

[Mel4]

I had chronic ear infections years ago and went on and off of steroids and eventually had tubes put in. I was 30...which seemed kind of odd. Itwas a T tube that stayed in for years. I have carried cotton balls, or made little ear plugs out of toilet paper too...so funny I'm not the only one! I have noticed significant ringing lately and definitely the opening and closing that is extremely annoying! I have been using flonase which really helps with keeping the ears open. When I had my tubes I had no problems. It just started to move so they took it out.
Right now I'm on 40 mg of pred and it does not seem to effect the ear stuff too much...but maybe it would be a lot worse if I wasn't on it? Who knows! Good luck and keep us posted:)

[PJ2010]

I'm also no different. For the whole 5 years with this disease I have suffered ear/hearing problems. I've noticed I have lost the ability to hear particular sounds.

As a mechanic it's crucial to have good hearing. Things like a squeaky fan belt I can't hear. The beep that sounds when the the jug is boiled or when the microwave finishes cooking. A real nuisance.

I have constant pressure within my ears.

The doctors have never followed up with complaints I've made concerning my hearing. I find now I just put up with it.

[Ruotsi1]

My issues started with ear infections and I have had tubs placed thre times (the first time I was 31.). I currently have tubes that have to be taken out in Nov/Dec and I'm hoping hey will stay out. I've recently had popping in one off my ears and some dull pain in the mornings.

[LisaT]

And here I was thinking that if I described hearing my heart beat and blood pressure in my right ear on and off, people would think I'm nuts. My ears have been bugging me and I'm told by drs they 'look' fine. Thus must be eustacian tube problems as well. I'm also having tinnitus.

[PJ2010]

I was just thinking. For years before I was diagnosed, I had suffered many problems with my ears. Constant blockages and infections. I remember reading that this disease can take years quietly smouldering before it lets rip and a diagnosis is made.
Pre-diagnosis, I wonder how many of us had such issues?

[drz]

I was just thinking. For years before I was diagnosed, I had suffered many problems with my ears. Constant blockages and infections. I remember reading that this disease can take years quietly smouldering before it lets rip and a diagnosis is made.
Pre-diagnosis, I wonder how many of us had such issues?

I had ear infections from an early age and several resultant ear surgeries and loss of my middle ear. I also had several sinus infections years before Wegs. My Weg expert at Mayo said this history probably predisposed me to getting Wegs later on.