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

Hello, I am writing to ask those diagnosed with autoimmune ear disease how you are doing. I have had a very bad month, with many attacks of tinnitus, pressure and hearing loss. Suddenly the next day I recover my hearing. My ENT doctor suggested that I not continue with oral corticosteroids (prednisone) and, together with a rheumatologist, start with 15 mg methotrexate weekly. It's been 3 weeks, but I still have some crises. In crises the tinnitus is uncontrollable, as if someone was shouting at me. My ENT doctor also gave me the possibility of, in case of a longer-lasting crisis, intratympanic injections of corticosteroids, but they make me a little afraid, any experience? greetings to all.

Hello - I just wanted to let you know that I too went on methotrexate that did work for a short period of time and then I’ve been on Humira for the last year It has kept my problem from getting any worse.
I also wanted to let you know that I was at the point where I might need to get an implant in my left ear and the last effort was to try Steroid shots in my left ear.
I was a nervous about it as well. It is a little uncomfortable. It feels like somebody’s pouring water in your ear and then when it gets full, it feels like a bad earache, but it’s only for a very short time. I don’t need an implant I’m stable. I have minimal hearing loss in both ears and the Humira is keeping everything from getting worse right now, hopefully this helps

I have also been diagnosed with AIED. It. was discover 6 years ago that I had hearing loss. 5 different kinds. My hearing was stable with no additional loss until I had Covid vaccines. 4 days after the second vaccine my hearing plummeted. I was put on high doses of steroids and had shots in the ears. Did not work. I then participated in a clinical trial using a drug used for RA patients. It was an 82 day trial- giving myself daily shots and blood work and hearing tests every two weeks. Spinal taps. MRIs. The works. It seemed to stabilize the loss until I was about 2/3 of the way through. Then hearing plummeted again. More steroids- but my body could not handle it and it was not helping. So I was taken off of them. This was in 2020. I qualify for CI but don't want to do it yet. I do pretty well with the hearing aids. Last year around this time I got scleritis in my right eye and was diagnosed with more issues. Tested for tons of things- nothing showed up. A couple of months ago I was at and eye check up. Doc thought I had Psoriatic Arthritis. Started all the testing again. Went to a rheumatologist. More tests. Diagnosis: AIED. This. is connected to the eye problem which is also very serious as it could call blindness. And it is also connected with skin problems. I don't have a protocol yet. I have hearing tests and doc check up every 3 months so when I have the next one- will see what I need to do. I have already had my freak outs along the way- before the diagnosis. Expected in any event to be deaf at some point. So this is not shocking but does make me really sad sometimes. I have been through the wringer- and it's likely time to seek more help. I think the thing I hate the most is constantly having to explain that I am hearing impaired. No way around it as there are times when I just cannot understand anything. I know all of you know- but the brain power it takes to keep with conversations outside of one on one conversations- is exhausting. I am grateful the diagnosis is not some horrible painful issue- but we all know- this is serious and heartbreaking. There is pretty much a concensus that this condition was likely kicked off by the covid vaccine. It is seen in the hearing world and also been responsible for inflammation issues in the eyes. I am exhausted from going to a zillion doctors but grateful to have wonderful care. Will update this when I have a protocol. Wishing everyone an easy go of it. Besides the heartbreak of the diagnosis- the inability of so many people to have compassion or empathy for this situation is astounding. If I only had one leg- no one would tell me to run. But there is such a lack of patiernce for hearing impairment. As well- I was advised to never have another Covid Vaccine and have had none since the first two. I only took the masks off 8 months ago. All very polarizing. I have always been a super social and active person- this stuff hurts! Will be tuned in to learn more about AIED and how you all cope and treat.

Welcome to Mayo Clinic Connect. Sorry you have been through so much. You will find so many great folks in this community willing to share their experiences.

Have you found help? I continue to lose hearing and tinnitus is loud 24/7. Neurotologist says AIED and go see Rheumatologist. Rheumatologist says “ I see no autoimmune problems, go to Neurotologist.” Neurologist did head/neck MRIs, MRV, CT and find all normal. All this started 6 years ago when I was 58. No one knows what to do. I need to find an expert in AIED fast. I can not understand people, TV, music even with hearing aids in. Did Prednisone and Methotrexate. Prednisone helped for 1 1/2 weeks then all gradually got worse. Saw no improvement with Methotrexate 12mg pills 1x week over 6 months. I’ll travel anywhere to find someone who can help me.

Do you have any positive markers for RA. Sjogrens, Lupus, etc.? A&A blood tests are they normal. Why do they call it AIED? on what tests are they making this diagnosis? Thank you for your post. Zenk

@needanswers7 So many others feel the same as you!
https://rarediseases.info.nih.gov/
https://rarediseases.org/
These 2 organizations are dedicated to autoimmune diseases and try to keep a list of doctors who specialize in rare diseases. Give them a call on Tuesday and see if they can help. I also have an informative article on tinnitus.
https://www.uchealth.org/today/how-long-does-tinnitus-last-do-hearing-aids-help/?
Please stay in touch and let me know what you learn!

My NRA was 1.5. I do not have any other auto immune diseases. We have some pretty great doctors here in Wisconsin, but there’s really nothing they can do for it. I am on Humira which is a shot every two weeks I had been on prednisone and methotrexate for quite some time. The methotrexate stopped working. The Humira does seem to keep me from getting worse I have been on it for a year, the other alternative if the Humira stops working would be to get a cochlear implant.

it sounds terrifying, but I’ve met a few people that have them and there are some people on Mayo Connent that have them a couple of the mentors and volunteers actually.

I feel your pain. I know it’s a horrible diagnosis and it’s bizarre and strange and nothing you could ever have imagined.

You can get through this. Ask your doctor about some of the other medication‘s and I’m sure some other people will respond to my post with some other ideas for you.
My thoughts and prayers are with you.

Have u tried a major teaching hospital?

No. All tests normal. Say AIED but can’t test for it or prove it. Say because hearing improved temporarily on prednisone then must be inflammation and autoimmune disease. No options for help other than cochlear implants when finally go deaf. I am completely healthy otherwise. Checked head to toe. No depression, low stress. My hearing is my major stressor. Have adjusted diet, tried autoimmune diet and inflammation diet with no significant affect.