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

I was on methotrexate at first, then Humira. The Humira is keeping my heating stable

Just curious..you said you lost one ear, then functional hearing in the other. I am deaf in my left ear from a left labrynthectomy they had to do because I was spinning in 4 directions at once. With your AIED, have you had the balance issues, as well as the hearing loss as I have? I don’t see people mentioning that, and while I have been a cochlear implant candidate for years, the vertigo aspect has been the much more disabling part of it.

After six years of hearing loss and tinnitus, I went to Duke ENT and Rheumatology and was diagnosed with AIED or possible Cogan’s Syndrome. On Aug 5, 2024, I ended a 4 month prednisone taper, stopped taking a multivitamin with 8 mg Iron, and started drinking the green smoothies recommended by Dr. Brooke Goldner in her book Goodbye Lupus. (Look her up. She offers her advice free on you tube.) Amazingly when I woke up Aug 6th, my tinnitus volume was way down and was no longer pulsating. I still have tinnitus, but it is at a volume now that I can ignore. It was so loud (like all machines were operating in a manufacturing plant 24/7) that I couldn’t hear through it. I had my hearing tested Aug 7th, no change in hearing loss but I could hear better due to the lower tinnitus volume. 2 months later my hearing was tested again and my left hearing had dramatically improved, my right ear remained the same. 2 1/2 months and my hearing and tinnitus have been improved. I don’t know what caused the improvement in my hearing but I am going to continue with the green smoothies because that is the only thing I have done differently that has helped. I drink 3 blenders full of smoothies per week. It definitely can’t hurt me. I started 50 mg Azathioprine Oct 3, then increased to 100 mg Oct 17. If all labs are ok I’ll increase to 150 mg on Oct 31. I haven’t seen a change since I started the Azathioprine. Has anyone tried Azathioprine (immunosuppressant)? What side affects or concerns did you have? I know to watch out for lymphoma (rare chance) and skin cancer. My hearing and tinnitus improvement all happened before I started Azathioprine. I know AIED hearing loss can fluctuate, but mine has never fluctuated in such a positive direction. I hope it lasts.

Hello Needs,
I was diagnosed with systemic Lupus in 2011. I proved allergic to Plaquinel after getting a severe rash and was then put on 50mg of Azathioprine. I have had no side effects. I do contend with low slightly lower WBC and RBC. In 2015 I began having changes in my hearing. Sensations of feeling muffled that lasted hours to a day before clearing. My rheumatologist put me on 3mg of prednisone at that time and I was on that about 5 years. About 3 years ago I had a dramatic change in hearing in my left ear. My ENT could find no cause and suggested a form of tinnitus possibly. Due to some changes in my liver enzyme numbers my gastroenterologist put me on a 2 yr treatment of Budesonide (a low dose) and increased my Azathioprine to 75mg. My liver returned to normal levels and I’ve been taken off the Budesonide. With Lupus I had developed autoimmune hepatitis. The increased Azathioprine appears to be controlling this aspect of my Lupus.
With all that being said, for me, the Azathioprine has been a very effective drug. I would be very interested in knowing what is contained in your “green”drink? I’ve always believed my ear /hearing problems are Lupus related.
Good luck with your journey 🙏. I appreciate your struggle!

Find one of several green smoothie recipes below. Google Dr. Brooke Goldner who wrote the book Goodbye Lupus to understand her methodology. Thanks for the info and good luck!

Keep refrigerated. Drink the entire blender full throughout the day. I do this 3 times a week. To improve Lupus, Dr. Goldner suggests drinking a blender full daily and not eating meat/fish/eggs products, not adding oils, dairy, and avoid processed foods, and alcohol. Try for 4 weeks and document your progress. Use raw vegetables.

All of this is super interesting. I also have Lupus and a number of other auto immune issues. I first lost hearing in my right ear when I was in my mid-20s. At the time they diagnosed Mienere's Disease because I have vertigo as well. Twenty years later I lost hearing in both ears and had to wear hearing aids. Recently I had another episode of severe hearing loss and they started talking about auto immune hearing loss. I am on prednisone but they only have me on it for a short time so I am curious about the longer time some people are on it. I now think maybe it is part of Lupus and a Lupus flare. I sympathize with everyone and am glad to have found this community. Especially curious about others with lupus and other auto immune issues.

I have Lupus-like ailments (?) that are being treated with hydroxychloroquine for 20 years now, but recently been diagnosed with Polymyalgia Rheumatica. Prednisone has helped both ailments, with side effects, and I’m working hard to get off it ASAP. I’m 84 years old, and probably had these conditions for years unknowingly. Autoimmunity was never really investigated thoroughly when I was younger, and all I was told by doctors was that I had arthritis (in my twenties!) prednisone is a good drug if you’re not plagued by the side effects.