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@cindylb

I am newly diagnosed with AIED and Sjogren's Syndrome. I finally got a diagnosis for the Sjogrens (although I've suspected for many years) because I have lymphoid hyperplasia in my eyes. Now it's my ears. I just finished a high dose taper of Prednisone and it completely resolved my ear problems but as soon as I stopped the AIED came back. So far I have low loss of hearing (but I also teach and play piano professionally so I'm keen on not losing my hearing) but.....the meds, even just the prednisone, which works for me, is causing me to have oral thrush, vaginal yeast infections and I also have diarrhea not releated to any of this or? This past 6 weeks have been awful. I am to start more prednisone but can't due to the yeast and despite many stool tests, no reason for the diarrhea. I am also taking Pilocarpine (but not right now) to increase moisture in my body. It works for me but the doctors can't figure out why I've been so sick....which med, etc. I am to start Methotrexate for the Sjogrens and AIED and want to resolve the hearing and associated dizziness, fullness, pain, headaches, but I can't until I figure out how to handle the stomach issues. I'm not good with most drugs and very anxious and miserable at this point. Not sure if Sjogren's, AIED, the meds or something else is causing my symptoms. More doc appointments this week but it feels very wobbly with them.....no one seems to know exactly what they're doing?

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Replies to "I am newly diagnosed with AIED and Sjogren's Syndrome. I finally got a diagnosis for the..."

Hi Cindy - I totally understand your predicament with all those other symptoms going on adding more meds to it just makes your symptoms worse I know with the methotrexate sore so I have to take Folick acid other than that the 77 pretty minor prednisone like you right now I’m still in 10 mg unfortunately it’s such a rare situation. They were in the doctors really don’t know what to do. It’s just kind of a game of trying different things which is unfortunate for both of us. I know the hearing loss is huge. Specially, with what you do. I’m sorry you’re going through this.

I'm just starting this journey. Dx of AIED. Tinnitus bad in left ear, plugged, full etc. Food seems to play a part in the severeness. Anyone have a diet that helps?