It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Hearing Disorders Message Board

  • Just diagnosed with Autoimmune hearing loss

  • Post New Thread   Closed Thread
    Thread Tools Search this Thread
    Old 12-30-2003, 10:54 AM   #1
    Sophina
    Member
     
    Sophina's Avatar
     
    Join Date: Oct 2003
    Posts: 52
    Sophina HB User
    Just diagnosed with Autoimmune hearing loss

    I was just diagnosed with Autoimmune hearing loss. The ENT put me on Predisone. Can anyone enlighten me on treatments for this?? I have lost more of my hearing in my right ear since my last appointment. (One month) I am kind of scared.

     
    Sponsors Lightbulb
       
    Old 12-30-2003, 04:12 PM   #2
    lovies10323
    Newbie
     
    lovies10323's Avatar
     
    Join Date: Dec 2003
    Location: Illinois, USA
    Posts: 6
    lovies10323 HB User
    Re: Just diagnosed with Autoimmune hearing loss

    I found something that pertains to your problem. Hope it helps.

    Derebery: The most common presentation trait includes a significant sensorineural hearing loss that occurs over a period of weeks to months. We all know that the most common causes of sensorineural hearing loss are presbycusis and noise exposure, but these are generally gradual losses over many years. AIED progresses much more rapidly with a significant decrease in hearing loss over a short period of time. While the criteria will vary, one thatís usually quoted will include a decrease in at least two consecutive frequencies of at least ten dB, or of fifteen dB decrease atin a single frequency, or a decrease in speech discrimination of 12% or more, all occurring over a period of three months or less.

    HH/Beck: Is AIED usually unilateral or bilateral?

    Derebery: AIED usually presents bilaterally or becomes bilateral, assuming you track it long enough. When it does present as a unilateral symptom, in our own series we have found that there is typically a difference of about five years between the presentation of symptoms in the first ear and the time the second ear develops symptoms.

     
    Old 12-31-2003, 04:54 PM   #3
    susie141
    Member
     
    susie141's Avatar
     
    Join Date: Apr 2003
    Location: Australia
    Posts: 60
    susie141 HB User
    Re: Just diagnosed with Autoimmune hearing loss

    Hi Sophina, I have a type of autoimmune hearing loss, although mine is part of a wider syndrome. I know how scary it is to lose hearing over a matter of hours/days. High doses of Prednisone are often used to treat autoimmune loss but the side effects are too serious to be able to carry that on for too long. Sometimes chemo drugs such as Methotrexate are used in combination with Prednisone. The purpose is to suppress the immune system and to reduce the inflammation in the inner ear.

    I've been treated with oral Prednisone but also have had injections of a steroid straight into my ear. That's what worked really well for me, and maybe that's something you could discuss with your ENT. Good luck, Susie

     
    Old 12-31-2003, 07:23 PM   #4
    Sophina
    Member
     
    Sophina's Avatar
     
    Join Date: Oct 2003
    Posts: 52
    Sophina HB User
    Re: Just diagnosed with Autoimmune hearing loss

    Quote:
    Originally Posted by susie141
    Hi Sophina, I have a type of autoimmune hearing loss, although mine is part of a wider syndrome. I know how scary it is to lose hearing over a matter of hours/days. High doses of Prednisone are often used to treat autoimmune loss but the side effects are too serious to be able to carry that on for too long. Sometimes chemo drugs such as Methotrexate are used in combination with Prednisone. The purpose is to suppress the immune system and to reduce the inflammation in the inner ear.

    I've been treated with oral Prednisone but also have had injections of a steroid straight into my ear. That's what worked really well for me, and maybe that's something you could discuss with your ENT. Good luck, Susie
    My ENT has referred me on to a Rheumatologist who specializes in Lupus. I have many other inflamations going on. I have inflamation in my brain (severe migraine), nasal passages and through my ears and down into my lungs. I also have had blood cells in my urine with no explanation for the last few months. I am a little anxious to say the least. I have been getting more ill every year for the last 14 years, so it will be good to maybe find out something and can be treated finally. My ENT has put me on Predisone for the time being. I have only been on it a few days, but I see no improvement. I actually think my hearing is getting worse by the day. I hear many low rumblings and dronning noises that sound like a tractor idleing.
    Thanks for responding..
    and Happy New Years to you all. :-)
    Sophina

     
    Old 01-26-2004, 08:08 AM   #5
    Sophina
    Member
     
    Sophina's Avatar
     
    Join Date: Oct 2003
    Posts: 52
    Sophina HB User
    Re: Just diagnosed with Autoimmune hearing loss

    I had one appointment with the Rheumatologist. He says I don't have lab work or the right symptoms to point to Lupus. He is however testing me for Wegeners Disease. I will admit I am scared. Wegeners is a rare disease and I don't know how treatable it is. I have most all of the symptoms for it. Do you hear noises that seem to be in your head with your ear problems? I hear three different noises that seem to move around, never being in the same place. I hear what sounds like tractors idling. I actually hear three different noises. Steroids did bring back most of my hearing, which is why my ENT sent me to the Rheumatologist. That and the fact that my Urologist found that my kidneys are inflammed and casting blood cells.
    Are meds helping your hearing?
    *hugs, I hope you are doing well.
    Sophina

    Last edited by moderator2; 01-28-2004 at 03:52 PM.

     
    Old 09-11-2004, 02:20 PM   #6
    what24
    Newbie
     
    what24's Avatar
     
    Join Date: Sep 2004
    Posts: 2
    what24 HB User
    Re: Just diagnosed with Autoimmune hearing loss

    The steroids/immune suppessant route I have done. Sorry to say it did not restore my hearing loss (autoimmune disease), but at least I stand a decent chance of keeping what little residual hearing I have. Taking the medication was not a cake walk, but I opt for it and have no regrets. Everyone is different, however. Best of luck.

     
    Closed Thread

    Related Topics
    Thread Thread Starter Board Replies Last Post
    Musician, just diagnosed with otosclerosis... JMusician26 Hearing Disorders 2 03-23-2009 09:33 AM
    Diagnosed with Menieres Halls Inner Ear Disorders 7 01-03-2007 12:53 AM
    Anyone with Autoimmune Inner Ear Disease? OneWorriedMom Hearing Disorders 5 08-17-2005 09:59 AM
    not yet diagnosed tiarah Multiple Sclerosis 0 07-27-2005 05:58 AM
    I tested positive for an autoimmune disorder coryb Inner Ear Disorders 8 09-27-2004 05:15 PM
    Autoimmune hearing loss, blood in urine and migraine amoung other things... Sophina Immune Disorders 3 04-09-2004 08:29 AM




    Thread Tools Search this Thread
    Search this Thread:

    Advanced Search

    Posting Rules
    You may not post new threads
    You may not post replies
    You may not post attachments
    You may not edit your posts

    BB code is On
    Smilies are On
    [IMG] code is Off
    HTML code is Off
    Trackbacks are Off
    Pingbacks are Off
    Refbacks are Off




    Sign Up Today!

    Ask our community of thousands of members your health questions, and learn from others experiences. Join the conversation!

    I want my free account

    All times are GMT -7. The time now is 10:36 AM.





    © 2021 MH Sub I, LLC dba Internet Brands. All rights reserved.
    Do not copy or redistribute in any form!