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

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.

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I have RA. I started 1 1/2 years ago with swollen hands and joints. My rheumatologist put me on prednisone low dose. Swelling went down to almost nothing. RA doctor put me on plquenil 200 mg twice a day. and methetrixate 8mg pills once a week and folic acid 1mg a day. I have tinnitus since 2004. My hearing in left ear not so good. Had cold and at 34000 ft. On plane ride Ears would not pop. Had to have dr. Pop left ear drum. I put afrin up my nose when I fly but still tinnitus 24/ 7. My ear dr. Wants me to get hearing aides but have not yet. Dr. Has me take water pill. Diamox. What I worry about is all the pills I am taking. Methetrixate, plquenil, folic acid and now the water pill . My RA dr. Does blood work to check my kidneys and liver and so far I am good. My RA is under control. I had a hysterectomy for endometrial cancer 1 1/2 years ago. Caught early. Then last Oct. I found breast cancer in left breast after mammo said neg. Ultra sound said neg. I felt it and diag. With ILC 11mm. Had lumpectomy and ultrasounds. ILC in breast does not show up with mammo. So will have mri from now on with hydration iv so dye does not tear up kidneys. I am worried about taking all these medications for RA that I have to take. I am worried that my liver and kidneys are going to get lesions. I drink lots of water. But I wonder if my dr should prescribe hydration infusion
monthly? Do you know? And would my Medicare and secondary pay for it?

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I have RA. I started 1 1/2 years ago with swollen hands and joints. My rheumatologist put me on prednisone low dose. Swelling went down to almost nothing. RA doctor put me on plquenil 200 mg twice a day. and methetrixate 8mg pills once a week and folic acid 1mg a day. I have tinnitus since 2004. My hearing in left ear not so good. Had cold and at 34000 ft. On plane ride Ears would not pop. Had to have dr. Pop left ear drum. I put afrin up my nose when I fly but still tinnitus 24/ 7. My ear dr. Wants me to get hearing aides but have not yet. Dr. Has me take water pill. Diamox. What I worry about is all the pills I am taking. Methetrixate, plquenil, folic acid and now the water pill . My RA dr. Does blood work to check my kidneys and liver and so far I am good. My RA is under control. I had a hysterectomy for endometrial cancer 1 1/2 years ago. Caught early. Then last Oct. I found breast cancer in left breast after mammo said neg. Ultra sound said neg. I felt it and diag. With ILC 11mm. Had lumpectomy and ultrasounds. ILC in breast does not show up with mammo. So will have mri from now on with hydration iv so dye does not tear up kidneys. I am worried about taking all these medications for RA that I have to take. I am worried that my liver and kidneys are going to get lesions. I drink lots of water. But I wonder if my dr should prescribe hydration infusion
monthly? Do you know? And would my Medicare and secondary pay for it?

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Oh my! You are taking a lot but RA is bad to have. I could not take Methotrexate , I tried but had a bad reaction. If your body is tolerating the drugs and your blood work comes back good i wouldn’t worry. I also had breast cancer. My daughter had a mammogram that was clear but she could feel the lump. She has a friend who is a breast cancer doctor and he treated her for an aggressive type. We must be our own advocate. I also have tinnitus and have trouble at higher altitudes like Denver.
Low salt, no aspartame and try some of the apps for meditation with Tinnitus.
Call medicare or get on the website and ask about an IV infusion. They are always helpful when i call.
There are newer RA medications with less side effects but cost more. I understand how you feel. I’m happy to chat anytime.
Lynne

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I have RA. I started 1 1/2 years ago with swollen hands and joints. My rheumatologist put me on prednisone low dose. Swelling went down to almost nothing. RA doctor put me on plquenil 200 mg twice a day. and methetrixate 8mg pills once a week and folic acid 1mg a day. I have tinnitus since 2004. My hearing in left ear not so good. Had cold and at 34000 ft. On plane ride Ears would not pop. Had to have dr. Pop left ear drum. I put afrin up my nose when I fly but still tinnitus 24/ 7. My ear dr. Wants me to get hearing aides but have not yet. Dr. Has me take water pill. Diamox. What I worry about is all the pills I am taking. Methetrixate, plquenil, folic acid and now the water pill . My RA dr. Does blood work to check my kidneys and liver and so far I am good. My RA is under control. I had a hysterectomy for endometrial cancer 1 1/2 years ago. Caught early. Then last Oct. I found breast cancer in left breast after mammo said neg. Ultra sound said neg. I felt it and diag. With ILC 11mm. Had lumpectomy and ultrasounds. ILC in breast does not show up with mammo. So will have mri from now on with hydration iv so dye does not tear up kidneys. I am worried about taking all these medications for RA that I have to take. I am worried that my liver and kidneys are going to get lesions. I drink lots of water. But I wonder if my dr should prescribe hydration infusion
monthly? Do you know? And would my Medicare and secondary pay for it?

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I'm not sure this is helpful...I was diagnosed with AIED 8 maybe 9 years ago. This discovery came to light with the onset of severe tinnitus following a course of antibiotics for pnemonia. After a visit with ENT he suggested a visit with a rheum MD as the thought process was perhaps my autoimmune disorder (Sjogrens) may be attacking the inner ear. She ordered a special lab test that did determine that I had AIED. My biggest concern was the rapid hearing loss and getting rid of the tinnitus. Tried methotrexate but quit after the initial dose and was afraid of side effects. What helped me the most was investing in a GOOD set of hearing aids. I got some that had a masker component. With more/better auditory gain, the tinnitus became more like a background noise, the masker (ocean waves) was helpful when sleeping. I now wonder if my lab was a false positive as I've read AIED the hearing loss is rapid and quick. None of that happened for me (the quick loss). You might want to consider a very good set of hearing aids, repeat the labs to r/o false positive and of course keep an eye on sudden rapid loss. My ENT spec gave me an RX to fill if it strikes and it's the weekend or after hours as getting on top of it is key. Good luck to you.

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My empathy and reply to all of you. I have had hearing loss since the 1980s, slight at first, now severe. Tinnitus in both ears since 2001 (high pitched "electronic" tone). Hearing aids since 2005 - on that subject someone here claimed that all hearing aids do is increase volume. Maybe the cheap ones, but mine have plenty of tone and specific frequency adjustments for each ear that clarify speech very well. 2018 my right vestibule over pressurized until damage occurred, resulting in 12 to 16 hours of debilitating dizziness, then vertigo, then throwing up (every other day for 6 weeks). My right eyesight also deteriorated overnight. Lots of doctors, PT, and every test known to man later, turns out for me it was a pinched nerve in my neck. So, for me, when the fullness in my ear starts, I can get that under control with neck exercises. I truly wish it were that simple for everyone who has this condition.
All of that is just background. 2022 I reacted to the 3rd Phizer covid booster - inflammation to my already damaged right ear. Only severe dizziness this time, no vertigo. ENTs were absolutely worthless (prednizone only worked while on it, both had nothing els to offer), neck exercises did nothing. Only 2mg valium, 4mg antinausea, and 1 to 2 hours sleep got me through. A ton of research, especially with VEDA (Vestibular Disorder Association) lead me to a PT who specializes in this arena.
I also discovered a slight misalignment with my eyes. Local optometrist and ophthalmologist said it was nothing, but further research lead me to a neuro-ophthalmologist and corrective glasses (needed glasses anyway).
I am to the point of just accepting that the nerves connecting the eyes and ears are somehow slightly damaged and not fixable. VEDA suggested the PT mentioned above to train my brain to recognize that the balance messages from my right ear do not match that from the left and both eyes (all four need to say the same thing). I do my exercises every day (takes about 5 minutes), and with my glasses - no dizziness for the last 3 months.
It took a lot of work to get here, but so far - success. I am back do doing the things I like to do - like my motorcycle and long mountain hikes. Surgery and more drugs are usually my last resorts.
My suggestions include personal research - plenty of vestibule, vertigo, and Menieres websites with peer-reviewed medical articles and studies that you might find give you answers that the doctors cannot. People in the medical professions are just people - they cannot know it all, and I feel it is up to the patient to be a major part of the fix. After all, we are (have) the problem, and although we know best how it effects us, we may not be able to express it well enough. And when they give us homework (exercises to help correct our conditions) DO THEM!
Good luck to all of you, and take care...

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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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I’ve been told there is no diagnostic test for AIED. Please tell me the name of the test and the medicine your doctor prescribed for sudden hearing loss/tinnitus episodes that occur over the weekend. Thanks!

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