1. < Autoimmune Diseases

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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tinae | @tinae | Mar 9 4:54pm

Mine was really unstable for a while as well. I think that’s where the long-term prednisone helped me and then again getting those three shots but I also did the methotrexate and then ended up on the Humira which at this time is keeping me stable obviously everybody’s different I’m wondering if your rheumatologist shouldn’t put you on the steroids for a longer period of time, the tough part about having this disease is the fluctuations. It’s really hard I know it sucks if you wanna talk if I can be of any help please reach out. I’m here for you. I know exactly what you’re going through.

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1 reply
teresaramirez | @teresaramirez | Mar 9 5:25pm
In reply to @teresaramirez "I understand what you're telling me, but it was like this, my last week I went..." + (show)
@teresaramirez

I understand what you're telling me, but it was like this, my last week I went from 30 mg to 0 mg, and I've been without anything for 3 weeks now. It was 2 weeks later when I was having these strong fluctuations. Although even before the disease was diagnosed, without taking corticosteroids, I also had these tinnitus+pressure+dizziness fluctuations, although not as pronounced. Thank you very much for your replies. I appreciate them very much. Yes, next week I will go to the ENT again to see possible treatments. He also gave me the option of direct injections of corticosteroids into the ear. I will also try to go to the rheumatologist and see options. I would love to find something that would make me stable. This thing about being good for 8 hours, bad for 12, good for 12, bad for one day, good for another... has me very confused. Again, thank you very much

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you're going to excuse me! But I never thought about the dosage of corticosteroids and no, I have never taken 120 mg/day!! My treatment was 4 weeks with de-escalation of 60-45-30-15 mg/day and week

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teresaramirez | @teresaramirez | Mar 9 5:32pm
In reply to @tinae "Mine was really unstable for a while as well. I think that’s where the long-term prednisone..." + (show)
@tinae

Mine was really unstable for a while as well. I think that’s where the long-term prednisone helped me and then again getting those three shots but I also did the methotrexate and then ended up on the Humira which at this time is keeping me stable obviously everybody’s different I’m wondering if your rheumatologist shouldn’t put you on the steroids for a longer period of time, the tough part about having this disease is the fluctuations. It’s really hard I know it sucks if you wanna talk if I can be of any help please reach out. I’m here for you. I know exactly what you’re going through.

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thanks for your answer. You are helping me a lot and giving me a lot of encouragement. My ENT doctor did not want to prolong the treatment with corticosteroids since I had no improvement in those 4 weeks of treatment, but it was already after 3 weeks of stopping taking prednisone when the fluxtuaxions began, and these moments of being well, recovering hearing and almost no tinnitus. The ENT doctor does not know if the corticosteroids have worked or not. On Monday I go to another rheumatologist, new, recommended by another ENT doctor. I will explain my case to you and see how it goes. The last rheumatologist I went to had not heard of autoimmune inner ear disease. So do you recommend I try corticosteroid injections? thanks!

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tinae | @tinae | Mar 9 6:09pm

So, in my case it was like the last resort my ENT didn’t think they would work, but I’ve been on such a roller coaster, emotionally physically. It was one of those things where I had to try it. Otherwise, I would regret it, and it brought back to hearing in the left ear, so mine has fluctuated just like yours tinnitus comes and goes. It’s always there, but it gets ramped up really bad, but like Becky had said the volunteer in the United States, I was on 60 mg and I was on it for nine months and every time it started to taper if the situation came back they put me back up so it took a long time but you have to remember an autoimmune disease is inflammation so it’s inflaming your inner ear. Your body doesn’t like it. My rheumatologist had never heard of it before so all he could do is treat what he knows for arthritis. The methotrexate worked in the beginning with pills, but then it didn’t so then he gave me shots and the shots you couldn’t get anywhere for a while unless you 4039, 4029 had cancer because there was a shortage so they went to Humira .
I will tell you having gone through this for the last two years at least in my case things have leveled off if you will your body starts getting used to the fluctuations they don’t happen as greatly and again stay hydrated, low sodium try not to drink a lot.
If it makes you feel any better, the reason I ended up on Mayo connect is I actually applied at the Mayo Clinic to evaluate my situation and they came back and told me that everything I was doing was exactly what they would do so I felt good about that knowing that the doctors here were doing the best they could.

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1 reply
tinae | @tinae | Mar 9 6:12pm

Also, the ENT is who did the steroid out of my ears now the rheumatologist it’s quite the procedure. My insurance covered it hopefully yours well they’re very expensive. It’s not comfortable but if it’s an option it’s worth a try.

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sbtheplumber1 | @sbtheplumber1 | Mar 9 11:06pm
In reply to @tinae "I know exactly how you’re feeling the same thing happened to me I was on prednisone..." + (show)
@tinae

I know exactly how you’re feeling the same thing happened to me I was on prednisone for nine months never at the level you’re at the most I was on was 60 and I went down to 2 mg after nine months but I also got those shots in my ear When my episode first happened that tinnitus put me over the edge I cried all the time and I told my mother I didn’t wanna live but then I realize that life is worth so I bought a sound machine I can send you one if you want I’m sure they have one there you plug it in next your bed and got 10 different sounds. I also have AirPods and calming things you put them in your ear and you try to take the focus off the tinnitus when you listen to waves or fire crackling And you just try to decompress. I know it’s my ears ringing every day and certain things make it worse. Stay hydrated reduce your sodium don’t drink alcohol or minimal don’t go in loud situations. It’s an adjustment. Trust me I’m not sure how old you are?
I finally been on side, makes it more bearable, because the natural noises are less intrusive than TVs and radios.
Again, I’m very surprised that they started you on 120 mg that is insane and yes prednisone it’s not good but it works and sometimes if you can take it and tape her down I would see if the shots would work for you. It’s a horrible situation, but I’ve been dealing with it for two years. You can get through this you can do it, you know have some support try to keep busy. Try not to dwell on it again put the AirPod and put one in one ear. I got hearing aids so I could listen to it because my hearing got so bad I needed hearing aids right now it actually got to wear I don’t need the hearing aids , I try to turn ceiling fans on noises so I can sleep with the tinnitus. The reason I asked your age is middle-age, so you also have the menopause that happens which part of the insomnia

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I have the severe tinnitus. I was working 4 pm to 4am so I needdd something to block the light and noise, the Bluetooth sleep mask was my hero I downloaded shuteye app which not only recorded my sleep which helped my doctor with my sleep apnea I was able to play a soft sound to help me sleep.

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tinae | @tinae | Mar 10 8:42am

Great information I’m going have to look into that!!

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cantek | @cantek | Mar 10 9:38am
In reply to @teresaramirez "My experience with corticosteroids has been that, during the 4-week treatment of prednisone 120/90/60/30 mg/day/week, my..." + (show)
@teresaramirez

My experience with corticosteroids has been that, during the 4-week treatment of prednisone 120/90/60/30 mg/day/week, my hearing did not improve even a single day, the tinnitus remained stable (medium level, bearable ) and the pressure is also bearable. Let's say that during treatment with corticosteroids I remained stable, without tinnitus attacks, and with stable hearing (with losses of 60-70 dB at 1000-500-250-125 Hz). Since there was no improvement in hearing, my ENT doctor and rheumatologist decided to wait to give another treatment. Immunosuppressants have side effects and now it seems that it is not worth it; The cost-benefit ratio is not worth it. but two weeks after finishing the corticosteroids, I have a seizure that lasts 1 day, and the next day I recover hearing and tinnitus practically disappear. So 2 days, and crisis returns although without dizziness. The next day again fine. So I don't know whether or not to go back to taking corticosteroids. My ENT tells me to choose, that this is just a matter of trying and seeing, but I didn't like the insomnia that the corticosteroids caused me.

It is extremely difficult to accept this type of disease.

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If you can get by without the steroids, do it!
I’ve been on steroids for three years, and I now have osteopenia and a huge cataract in my right eye! Longterm steroids are so destructive!!

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needanswers7 | @needanswers7 | Mar 10 9:49am
In reply to @tinae "I know exactly how you’re feeling the same thing happened to me I was on prednisone..." + (show)
@tinae

I know exactly how you’re feeling the same thing happened to me I was on prednisone for nine months never at the level you’re at the most I was on was 60 and I went down to 2 mg after nine months but I also got those shots in my ear When my episode first happened that tinnitus put me over the edge I cried all the time and I told my mother I didn’t wanna live but then I realize that life is worth so I bought a sound machine I can send you one if you want I’m sure they have one there you plug it in next your bed and got 10 different sounds. I also have AirPods and calming things you put them in your ear and you try to take the focus off the tinnitus when you listen to waves or fire crackling And you just try to decompress. I know it’s my ears ringing every day and certain things make it worse. Stay hydrated reduce your sodium don’t drink alcohol or minimal don’t go in loud situations. It’s an adjustment. Trust me I’m not sure how old you are?
I finally been on side, makes it more bearable, because the natural noises are less intrusive than TVs and radios.
Again, I’m very surprised that they started you on 120 mg that is insane and yes prednisone it’s not good but it works and sometimes if you can take it and tape her down I would see if the shots would work for you. It’s a horrible situation, but I’ve been dealing with it for two years. You can get through this you can do it, you know have some support try to keep busy. Try not to dwell on it again put the AirPod and put one in one ear. I got hearing aids so I could listen to it because my hearing got so bad I needed hearing aids right now it actually got to wear I don’t need the hearing aids , I try to turn ceiling fans on noises so I can sleep with the tinnitus. The reason I asked your age is middle-age, so you also have the menopause that happens which part of the insomnia

Jump to this post

Do you have any other rheumatoid problems other than the hearing loss/tinnitus? My cell counts and inflammation are satisfactory and tests show no autoimmune problems. Sudden hearing loss, like you, and very loud tinnitus are my main problems. What meds did you use right after the prednisone and did it help? Did you have any bad side effects from the injections? I’m worried the needle will damage my hearing more. After the injections, did you go straight to Humira and is that all that you take now? Did I understand you correctly that you no longer need the hearing aids now that you are on Humira? Sorry for so many questions. I’ve tried prednisone 60 mg taper, methotrexate with no lasting improvement. I just started a diuretic and Allegra for 3 months to try to reduce fluid in inner ear. Avoiding salt, caffeine, alcohol, chocolate, sugar. No result yet. Continue to lose my hearing with constant loud tinnitus. I can’t hear through all of the tinnitus! ENT not sure if cochlear hydrops with Meniere's or AIED. All other tests are clear. This is so frustrating and scary.

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1 reply
willows | @willows | Mar 10 10:53am

Teresaramirez, I wish I had any good periods. I have very loud tinnitus that goes to unbearable at times. I have various masking devices which I choose to use depending on the sounds and tones of my tinnitus on any given day. I also have fluctuations during both the day and night but never any good periods where I can say that it is in the background. If I am sick it is terrible. I am sorry that you are stuck with additional problems with your ears.

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