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

Autoimmune Diseases | Last Active: 4 days ago | Replies (212)
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@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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Replies to "Mine was really unstable for a while as well. I think that’s where the long-term prednisone..."
teresaramirez | @teresaramirez | Mar 9 5:32pm

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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