Ear issue

[sheasheasmom]

I am hoping someone here will recognize what could be going on with me. I was diagnosed in late March. My main damage was to my hearing..specifically my left ear. Long story short..
I am currently tapering on pred and at 30 mg and 3 weeks ago my local rheumy switched me from methotrexate pills to injectable once per week.

The scary thing is over last week I felt my hearing overall was worse...confirmed yesterday by audiologist when I finally went for fitting for hearing aid for left ear....the tube that was in right ear since Jan is gone, no movement of ear drum indicating fluid behind ear and some hearing loss all in right ear while left remains stable.

I am scared because gpa caused hearing loss in 3 weeks in my left ear...very fast. I am wondering if fluid indicates active disease...could it be overcoming pred and methotrexate? I do have lung involvement and over last month had some shortness of breathe that is being investigated with no findings yet. I am going back to ear specialist tomorrow but he is no wegeners Dr...he is one who operated on my left ear and didn't recognize what it was.
I am waiting to hear from local rheumy and I even emailed Dr koening at univ of it who I saw in June.

I don't want to sit around and lose more hearing but I am just guessing at what it is or what/who can help.

Any ideas? Thank you!

susanp

[pberggren1]

Go see your ENT ASAP.

[drz]

Go see your ENT ASAP.

See some one soon. Hearing loss can quickly become permanent and many of us lost our hearing from GPA. Fluid build up behind ear drum is common from GPA damage to Eustachian tubes and this can be treated. Damage to nerves and balance mechanism in inner ear is another matter but usually large dosages of steroids (prednisone or equivalent) are used to try prevent permanent damage. Some times it works and sometimes the damage is done.

[sheasheasmom]

See some one soon. Hearing loss can quickly become permanent and many of us lost our hearing from GPA. Fluid build up behind ear drum is common from GPA damage to Eustachian tubes and this can be treated. Damage to nerves and balance mechanism in inner ear is another matter but usually large dosages of steroids (prednisone or equivalent) are used to try prevent permanent damage. Some times it works and sometimes the damage is done.


Thank you both.

I was able to see my ear specialist who performed surgery on my left ear before gpa diagnosis when it looked infectious. He put another small tube in right ear and will monitor for fluid to return in month and go from there. I also heard from my local rheumy and Dr koening...seems like careful wait and see. I was able to fly on plane today no problem and ear feels a bit better. Fingers crossed but at least I feel "in front of " game this time....last time I was just clueless what could happen and so quickly. Thank you for your input...now it is time to take a few days and concentrate on my youngest child having a fabulous trip to so cal....she has missed out on a lot this past year with a a sick and distracted mom. Time for fun.. now if I could just buy some extra energy...Sigh. one day at a time.

Thanks for being a safe place to come panic. Susan