Anyone out there with Autoimmune inner ear disease (AIED)?

Posted by tinae @tinae, Apr 29, 2023

Hi - I have been on an emotional roller coaster for the last year since my diagnosis of AIED. Just looking to see if anybody else out there has been diagnosed and how they’re dealing with it. Thank you.

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seniormed | @seniormed | Jan 25 12:59pm

I noticed decrease acuity and distortion with my last flare of psoriatic arthritis. Steroids then Humira seem to have helped.
Melatonin is now being researched as neuroprotective. I also take my
Ocuvite, vitamin D and Turmeric. Hope the hearing aids keep working for me.

lynnehenry21 | @lynnehenry21 | Jan 26 8:30am

I have not seen a nuerologist but may see one for second opinion.
Lynne

lynnehenry21 | @lynnehenry21 | Jan 26 8:33am

I was diagnosed in Nov of 2023.
It is attaching mt left ear. I am deaf in my right ear.
Currently seeing a rheumatologist and taking a medication for rheumatoid arthritis. Only been on it a week but praying it will work

rwiltgen1 | @rwiltgen1 | Feb 14 7:54am

I’ve not yet been diagnosed with anything yet. But my experience and symptoms are the same. I’ve alerted my ENT doctor about this before my appointment for this problem.
Ray Wiltgen

rwiltgen1 | @rwiltgen1 | Feb 14 7:59am

In reply to @becsbuddy "@tinae Hello and welcome to Mayo Clinic Connect! I’m sure we can answer your question, but..." + (show)

Becky,
I may have this very same problem. I have yet to be diagnosed by my ENT doctor, but my experience and symptoms are the same. Other than seeing my doctor in two weeks, what do you suggest I do next?
Ray Wiltgen

lynnehenry21 | @lynnehenry21 | Feb 14 10:24am

I have AEID in my left ear and I’m deaf in my right ear. I went to an otolaryngologist and tried prednisone and it worked but long term i had side effects in my stomach. Doctor sent me to a rheumatologist and he put me on a RA drug. I took it one week and had diarrhea and felt like the flu for 2 weeks. He wanted me to wait a week and try again. I declined. He had no plan B. I’m looking into cochlear implants with my otolaryngologist. Sad!

lynnehenry21 | @lynnehenry21 | Feb 15 1:47pm

In reply to @lynnehenry21 "I was diagnosed in Nov of 2023. It is attaching mt left ear. I am deaf..." + (show)

It is so frustrating! Would you share which RA drug you’re on.
I was on Mycophenolate and had diarrhea and had to stop.
Ive been looking into a Cochlear Implant.

tinae | @tinae | Feb 15 3:09pm

I was diagnosed back in July if 2022. I did prednisone for several months & methotrexate. I also had 3 consecutive shots of steroids in my left ear, that seemed to stabilize that ear. I am now on Humira which seems to be keeping everything stable. I still have hearing loss and tinnitus (my favorite) I am taking it day by day and if the Humira stops working I will be on the road to cochlear implants.

Tina

Becky, Volunteer Mentor | @becsbuddy | Feb 15 4:37pm

In reply to @rwiltgen1 "Becky, I may have this very same problem. I have yet to be diagnosed by my..." + (show)

Hello, Ray @rwiltgen1 From what I gather, the only thing to be done is to wait and see the ENT. They are the ones that can diagnose you, but I might suggest that you go ahead and find a good rheumatologist, in your area, as they are the specialist most people are referred to.
Do you have other autoimmune diseases?

rwiltgen1 | @rwiltgen1 | Feb 15 5:15pm

In reply to @becsbuddy "Hello, Ray @rwiltgen1 From what I gather, the only thing to be done is to wait..." + (show)

Thank you.
I also have Waldenstrom’s lymphoma—not active right now. I do have a rheumatologist and he’s aware of what’s going on: appointment early next month.

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