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

Hi again! @poc1115 @seniormed , how are you?
What treatment are you following?

I finished my prednisone cycle two weeks ago and I am having days of almost 100% hearing recovery with days of loss again and with very very high tinnitus and pressure and blocked ears.

Do corticosteroids take effect a few days after finishing the treatment?

Thanks a lot!!

Hi - in my experience no, once you stop the treatment or you’ve tapered that result is pretty much what it is at least that’s how it’s been for me obviously everyone’s different.

The fluctuation is a big part of AIED.

Maybe you could have your ENT recommend recommended rheumatologist and try some of the anti-inflammatory medication’s out there good luck keep me posted.

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.

@teresaramirez Yes, these diseases are very, very hard to accept. I think it took me a few years to accept my brain autoimmune disease. But I finally did because I had no choice! The disease wasn’t going anywhere!
So you were on steroids for about 4 weeks. And you last week was at 30mg? Did you taper until you got to no steroids or did you stop at 30mg? Ive been on steroids for 6 years because the disease comes back when i try to stop them. I’m also on immunosuppressants. Yes, I had some side effects from steroids, but they also saved my life! Insomnia is not a problem if you take the steroids in the morning.
Have you thought of specific questions to ask your doctor? What would you like to know from the ENT?

I completely understand how you feel. my situation is very similar to yours. I was diagnosed at 56 woke up in the morning with plugged ears and it’s been a tailspin ever since I am a little surprised with the steroids that they didn’t taper you much lower than 30 mg, but I can tell you with AIED the fluctuation is part of the disease if your insurance would cover some of the other anti-inflammatory meds it’s worth a try. You’re right this is super hard to accept. I tried to figure out what I did wrong and why this would happen to me, but it is what it is. It’s not fair. None of us know why it happened to us.
I was very fortunate to have an audiologist that was amazing and my ENT. I was very reluctant to go to the rheumatologist. I read the side effects of the meds. I also read the percentage of those side effects so for me it was worth a try. I don’t know what my future holds, but I take it day by day I try to enjoy life and have fun. I have the fluctuating tinnitus. I had the insomnia and the weight gain from the prednisone and I hated it and after all that I ended up with a bunch of other medical issues that I was struggling with Try to be optimistic. Try to stay positive. Try to accept what God is giving you I broke down and cried with my doctors. My rheumatologist was so angry and said, why won’t you try these medication you’re going to lose your hearing so I did it, and I figure the worst case scenario with this if I don’t take any meds, I lose my hearing, and I have to get a cochlear implant , which seemed terrifying at first but I’ve talked to several people that have them and you can live with them and you can have a perfectly normal life. And none of helping you it could be a lot worse. Try to remember that.

Also, the steroids are not good to stay on. The other thing I would recommend or see if it’s an option for you and it’s not comfortable while my right ear had issues my left ear failed drastically and I did a last effort and I did three back-to-back steroid shots in my inner ear, that seem to stabilize my left ear, but again, I also am taking, some anti-inflammatories . I tried methotrexate and then I went to Humira. Right now I’m on Humira. It’s super expensive in the United States but my insurance is fortunately covering it for now.
So, like I said, it could be worse I’m gonna share with you my Monday and Tuesday of this week. My mother‘s friend son hung himself at 54 my nieces 26 year-old boyfriend died. No one sure how or why and my boyfriend’s Mother died. So take a deep breath find a calming platform to put on your phone to take your focus off your tinnitus. Try to still get out there and walk in the exercise and make an appointment with your ENT or find one. Maybe that’s better and ask some more questions and also consider maybe taking some of those other medication’s.

Of the 4 weeks of treatment, the first took 120 mg/day, the second took 90 mg/day, the third 60
mg/day and the fourth week 30 mg/day. And that's where I finished, yes, I stopped taking prednisone, and I've been without taking anything for almost 3 weeks. The episodes of tinnitus attacks, pressure and hearing loss, plus recovery (total fluctuation) began 2 weeks after taking the
cortiocides. I've been like this for a week now. My concern and doubt is whether I should take corticosteroids again or not. and if possible, do not start with a dose of 120 mg/day, because it is narcotic. but let's see...
How do you handle the days when the tinnitus is unbearable? It doesn't even let me sleep, and it makes me very depressed 🙁

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

Sorry, I talked to text being outside makes it more bearable. I should’ve read that before I sent it.

@teresaramirez I’m really having trouble understanding your steroid tapering. In USA we all taper slowly from 30mg to zero mg so we don’t have the problems that you had. I know you don’t want to be on steroids, but once you're on them, it’s important to taper slowly.
https://www.mayoclinic.org/prednisone-withdrawal/expert-answers/faq-20057923#:~:text=A%20gradual%20reduction%20in%20prednisone,a%20week%20to%20several%20months.
Your doctors may have an entirely different way of thinking and I certainly don’t want to contradict them. Just wondering if there is a connection between the steroid taper and the seizures you had.
Can you talk with your doctors about safe steroid use?

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