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Anyone out there with Autoimmune inner ear disease (AIED)?
Autoimmune Diseases | Last Active: Oct 31 6:20am | Replies (228)Comment receiving replies
Hello. I was also diagnosed with AIED two months ago, here in Spain, after having spent months seeing ENT specialists and telling me that I had otosclerosis, even with the possibility of surgery. Thank goodness I found an otoneurologist who tested me for cochlear antibodies. Furthermore, my symptoms were not consistent with otosclerosis. Take a first dose of prednisone with 120 mg/day for one week, and then reduce the dose each week, until I have completed 4 weeks. We don't know if it has worked. I have had a bout of tinnitus and fluctuante hearing loss again. I would love to be in contact with more people in my situation. Very rare disease with little information and I hardly know anyone diagnosed.
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Hello, I was diagnosed with AIED two years ago. I did several rounds of prednisone for nine months then methotrexate, which worked for a short period of time and then finally I ended up on Humira. I’ve been on the Humira for a year it seems to be keeping my condition stable. I do have tinnitus and probably a 15% hearing loss in each ear.
As far as the tinnitus, make sure you stay hydrated and reduce your sodium intake that seems to keep that from getting worse and avoid extremely loud situations.
I have an awesome audiologist and a great ENT. I am sorry you’re going through this. I think for all of us diagnosed it’s just a matter of trying different medications that might keep it stable but at this time there’s really nothing else we can do. Several people that have reached out thru Mayo connect have cochlear implants and they have adjusted very well to them. At this point, your ENT may more than likely direct you to a rheumatologist who can try some anti-inflammatory medication, which is what methotrexate and Humira are.
Please reach out with any other questions and keep us posted on your journey. We’ll connect as a great platform for five new people with similar medical conditions. Tina