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DiscussionAnyone out there with Autoimmune inner ear disease (AIED)?
Autoimmune Diseases | Last Active: Oct 31 6:20am | Replies (228)Comment receiving replies
Replies to "I know exactly how you’re feeling the same thing happened to me I was on prednisone..."
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.
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.