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Thread: Looks like Autoimmune Inner Ear Disease....

  1. #1
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    Unhappy Looks like Autoimmune Inner Ear Disease....

    I won't go through the whole long story, but the short one is I went profoundly deaf in my right ear about 10 days ago...on 60mg Prednisone/day, I have regained a tiny bit of hearing, but not enough for a hearing aid.

    After ruling all sorts of other stuff out, it looks like Autoimmune Inner Ear Disease....and my Rheum will have to work with the Neuro-otologist to manage this aspect of my Lupus/Sjogren's/APS. It is likely to relapse/remit, and will likely progress to both ears over time. Methotrexate or Cellcept are options, both long-term. Basically, if we can't keep things in check, I will go deaf. It also points to CNS involvement.

    They're still looking for answers.

    So am I.

    If anybody has anything to offer about the after-effects of Prednisone (I am tolerating 60mg a day quite well for the last 10 days - I feel better than I have in years, ironically....), how it feels to taper it down (I have never taken so much before), Methotrexate vs. Cellcept, or just hearing loss/CNS issues in general, lay it on me. I am doing tons of online research and just want to be covering my bases and making sure I am asking the right questions.

    I am really pretty down about this. I thought the Plaquenil was keeping things in check, but now I am scared. Plus my horse stepped on a nail and needs lots of care and I am not able to work as much to pay for him, the car has blinking caution lights and needs service, and our fridge died last night. Petty stuff and it will all work out in the end, but really - WHY NOW?!

    I am trying to count my many blessings and let go of the rest. It is hard.

    Thanks for listening.

  2. #2
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    SleepyInSeattle (05-10-2012)

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    Sleepy,
    I feel for you, sweetie. My hearing loss seems to have leveled out and hasn't gotten much worse for a few years. My left ear got bad fairly quickly - I've lost 60% in that ear. I used to give my students a hard time with it - Boys mumble, and a boy would come up to my desk, mumbling. I'd say "What? Speak louder." Mumble again. I'd say "Tell me again in my good ear." He'd be embarrassed and ask loudly "Can I go to the restroom?" I'd answer "Potty? Oh sure." I loved making them squirm!
    I can't hold the phone to that ear - the person's voice sounds like it is far, far away. The right ear is better - just 30% lost. I could always tell when the hearing was going to get worse. I would have lots of odd noises in one ear - sometimes it sounded like I was in the middle of a hearing test. Then the ear would hurt all night - it felt like it should be draining all over my pillow, but nothing was there. After that, the hearing in that ear would go down.

    I can't help you on the prednisone - I'm not able to take steroids because I've had Avascular Necrosis. I've taken MTX and it helped. The side effects are unpleasant, but it does help. Check out the thread called "It's M Day" started by Iseedeadmonkeys for a long discussion about MTX.
    http://forum.wehavelupus.com/showthr...5051-Its-m-day
    Good luck - I hope that your hearing comes back a bit.
    Hugs,
    Marla
    Last edited by magistramarla; 05-03-2012 at 10:34 PM.

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    SleepyInSeattle (05-10-2012)

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    I have no experience with any of this, but I just wanted to say that I'm sorry you're going through so much. Being worried about your health is bad enough, and adding on your horse's care and fixing the car and fridge seems like too much! My partner just went through a long spell of health problems, and I felt like I couldn't function! It was a huge relief when some things started improving. I hope that happens for you soon.

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    SleepyInSeattle (05-10-2012)

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