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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
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.
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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!