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RA and AIED (Autoimmune Inner Ear Disease)

I desperately need this site. I was looking for a support group or forum. My journey began with typical allergy symptoms and a feeling of off balance. Then I woke up with no hearing and a machine noise in my right ear. My equilibrium was so bad I couldn’t even drive. I was diagnosed in March with autoimmune inner disease (AIED) due to RA. My RA attacks the small bones and vestibular system of the ear. Hence I have loss hearing, balance, equilibrium and eye acuity. I’ve been on 60mg of Prednisone, Planquenil, Metotextrate and Sulfasalazine with supplements. This greatly improved my symptoms. I started to taper off the prednisone and now I’m down to 35mg/day. But recently felt like my symptoms return. I had to go back up on the dose. I thought something was wrong with me and all the meds were a waste of time. This is not for the weak! As I am tapering down I feel awful. I’m weak, tired get headaches, lethargic and depressed. Will this ever end? In addition, I am getting so depressed. I have to learn to accept and live with hearing loss (bilateral) and loss of balance (I now have to use a walker) is there anyone else with AIED?

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  • Doesn't Feel Like Me
    3 years ago

    Hi pinpinny, while I am sorry to hear of the ordeal with your ears, I am glad to see this post. I have had some ear issues over the past year or so but didn’t think about it being RA related. Sometimes the doctor says they are red and gives me a antibiotic and sometimes they say they are not and give me prednisone. I have awakened the last three days with a sharp pain that shoots through my ear when I close my jaw, first thing in the morning. The rest of the day my ears ache. It is painful and I can understand your depression. This disease is awful. I hope you feel better soon.

  • Lauren Tucker moderator
    3 years ago

    Hi pinpinny,

    We are glad you found our site and we thank you for sharing your story with us.

    We are sorry to hear your symptoms have returned and you are not feeling great. While you certainly are not alone, there may be other community members that have had this experience too and you may get some additonal feedback and support.

    Please come back anytime for support, information or questions, we are here for you!
    Thanks for being part of our community.

    Best Wishes,

    Lauren (Community Manager

  • Jillian S moderator
    3 years ago

    It’s good to hear back from you. Our community certainly understands what you are going through and simply knowing you are not alone can make all the difference.
    In addition to Lauren’s post, I wanted to share a few articles with you that I think you may be able to relate to. Also be sure to check out the comments beneath each article for feedback from members like you 🙂

    Fostering Hope While Dealing With RA:

    How She Keeps Living With RA:

    Thank Goodness for Predisone… I Think:

    Facing Fatigue:

    I hope you find some of this info helpful. We will be here for any follow up questions, comments or concerns you may have.

    Jillian ( Team)

  • pinpinny author
    3 years ago

    Thank you Lauren for your quick reply! As stated in my post, I needed to find others who understand what I am going through. I need to connect and share my journey with you and others

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