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Anyone out there with Autoimmune inner ear disease (AIED)?
Autoimmune Diseases | Last Active: Oct 31 6:20am | Replies (228)Comment receiving replies
I have worn hearing aides for the two years prior to AIED. The hearing aids do help. My left ear is the one most affected by AIED, so I can turn up the volume on my left hearing aid to hear better. However, the word recognition is not all that great. But I can hear with my right ear with the hearing aid. For that I am thankful.
I just got a call from my rheumatologist at Mayo who said all of my labs are done and he sees no indication of a systemic rheumatic disease such as lupus, vasculitis, etc. The AIED is autoimmune, but not systemic. I have an appointment with my rheumatologist and ENT at Mayo at the end of October to evaluate my progress. Until then, I am to keep a log of my symptoms and stay on a low sodium diet to see if it helps. I emailed my ENT today to see if she thinks I should go to my ENT in my hometown to have another ear injection since I still have fluctuating hearing loss. I have only had one injection while at Mayo about a month ago. I was not given a second injection two weeks later at Mayo, because at the time, my hearing had improved. I'm waiting for her response.
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How are you doing now? Your situation sounds like mine. No systemic cause so far for me. Hearing continues to decline and tinnitus is so loud 24/7. Good results with Prednisone but hearing loss comes back after a week of stopping med. Tried Prednisone 60mg for 21 days then Methotrexate 7.5 mg once a week for 4 months then increased to 10 mg for a month with worsening hearing. Off of everything now. I can not find a rheumatologist or ENT with experience with AIED. Did your Mayo doctors both have previous experience with AIED with success? If so, I’d be willing to travel to them. I’m in NC. Could you share their names and contact info if you are pleased? Thanks!
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Hi Nancy, so our situation’s are very similar other than the fact that I did not need hearing aids prior to AIED. It started with a fullness in both ears then only the right was slightly affected. There was some confusion on the diagnosis I was told to watch my sodium as well and drink lots of water. Since then it has spread to my left ear, which is how they diagnosed AIED. Once it went bilateral, they determined the diagnosis so I have been on prednisone for nine months and then methotrexate and Humira those are both drugs that work well for arthritis, so there was a thought it might work for what we have due to the inflammation. I’m guessing none of the drugs are really working well for me at least, so I am giving it a couple more weeks, I did get the shots in my ear like you. It’s kind of a waiting game for me right now, so I had reached out to the mayo clinic for a second opinion they would not see me, but they did determine that they would treat my situation the same as the doctors currently were so I felt pretty confident about that , if you like your ENT that’s local and the audiologist, closer to home is always easier,,especially if you have to go in more often with the situation but either way I would try to get in as soon as you can when you notice a fluctuation they’ll probably put you back on prednisone to see if they can salvage some of the hearing loss. I also agree with the hearing aid, not helping with clarity I realized all hearing aids really do is give you the volume or they amplify. The unfortunate part is, when you have a we have, your hearing is more distorted they don’t work as well for clarity like you have said, that’s where the CI comes in but you have to qualify for that as well and usually you need to have what they call a dead ear or extremely bad hearing, that doesn’t work with the hearing aid. Good luck with everything hang in there.