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

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 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.

Had the Humana worked I would’ve been going towards the cochlear implant. The other thing that my ENT did is he directly injected steroids into my failing ear there were three of them back to back. It did save that left ear from the cochlear implant so at this point, I’m on the Humira.

I did ask to talk to a few people that had cochlear implants.

I think when you’re faced with losing your hearing to no fault of your own, it’s overwhelming, but I When you get to the point that an cochlear implant is your only option. Your hearing will be so bad that the implant will be blessing.

If you want to ask the question on the Maio connect, I know there’s several people that have cochlear implants.

I’m very sorry you’re going through this!!

Good morning tinae,
I wanted to ask you how you are doing with the topic of autoimmune ear disease.
More than anything, I am very desperate. I have had the disease for two years and there is no way to stabilize it. I am on cortisone and methotrexate (5 months) and I have not noticed much improvement. Now I am back to where I was at the beginning of the disease. Could you tell me how you are doing, what about Humira and its side effects?
Thank you

Good morning @becsbuddy,
Well, I've been on MTX for 4 months now and I haven't stopped cortisone since January... and maybe at first I noticed some improvement in the sense that my symptoms were fluctuating but I'm terrible again, I haven't managed to stabilize myself at all... and It's exasperating. The hearing loss goes up and down a little but every month I have more loss and the pressure and tinnitus are horrible... I have been to many ENT specialists, none of them know what else to tell me. I am on the waiting list to get a cochlear implant since I lost my left ear 11 years ago. But the problem of the right ear cannot be solved with anything.
Thank you very much for your support.

I’ve found that we have to try many modalities to be able to function with this disease. B vitamins have been helpful I found a supplement called lipoflavanoid recommended by my ent years ago although it says for tinnitus it helps with inner ear problems and has been very helpful over the years also I use accupuncture for flare ups. The doctors are clueless after using prednisone they have nothing else

I am deaf in my right ear from minear’s Desease. Last November i lost hearing in my left ear and could not understand any speech or music. I was terrified and went to an ENT who said it was AIED wanted to put me
on high dose steroids. I choose to call my Otolaryngologist that diagnosed my Minears. He said it was AIED and sent me to a rheumatologist that gave me a powerful drug for rheumatoid arthritis. I had a bad reaction and he had no other options. I am now going to be evaluated in May for a cochlear implant with my Otolaryngologist at UTSW.

Good morning @becsbuddy,
Well, I've been on MTX for 4 months now and I haven't stopped cortisone since January... and maybe at first I noticed some improvement in the sense that my symptoms were fluctuating but I'm terrible again, I haven't managed to stabilize myself at all... and It's exasperating. The hearing loss goes up and down a little but every month I have more loss and the pressure and tinnitus are horrible... I have been to many ENT specialists, none of them know what else to tell me. I am on the waiting list to get a cochlear implant since I lost my left ear 11 years ago. But the problem of the right ear cannot be solved with anything.
Thank you very much for your support.