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Thread: Wegners in ears

  1. #11
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    Default Re: Wegners in ears

    It was sinus first for me, and then I lost total hearing in my left ear.
    6 months after WG treatment started, the hearing started to return, and now the loss is only mild, and only noticeable when there are other background noises going on.

    Good luck with your appointment, and I will keep my fingers crossed for you to get your hearing back.
    Keep Smiling
    Michelle


    Live your life in a way that you wouldn't be ashamed to sell the family parrot to the town gossip - WILL ROGERS

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  3. #12
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    Default Re: Wegners in ears

    Hi,
    Most of my secondary symptoms have involved my ears. The first wave of GPA (2 years ago) was like a super bad head cold that just wouldn't go away. About three months later after the head cold symptoms resolved, my ears started plugging up. There wasn't any pain associated with it and for a while I could clear them temporarily with an otovent balloon device. But that stopped working. So saw an ENT and he put a tube in my left ear because the ET had stopped working and fluid couldn't drain like it was supposed to. (The right ear had spontaneously cleared) About a year after the first tube was in, the Eustachian Tube in the right ear started acting up, opening and closing "popping" in sync with my nose breathing. MY ENT and I waited on it for a year but it didn't get any better (or any worse either) but it was making me nutty. So he put a tube in that ear a month ago which has pretty much fixed the issue. (We replaced the other at the same app't because it had finally fallen out.) I have had tinnitus in the left ear since before GPA, but it is somewhat worse now. My hearing isn't bad, the audiologist test shows I have good hearing in the vocal ranges, some loss in the upper and lower ranges, but some of that is age related (I'm 63). My med regimen has been MTX, Bactrim, folic acid for 2 years now. Prednisone did nothing for me. My C-ANCA seems to oscillate quarterly from negative to a titer over, and PR3 is up and down too, neither of which correspond to any sort of noticeable symptom shifts. I'm not, according to blood work technically in remission, but symptom-wise everything else seems to be fine. That's what my rheumy and I work off of: how do I feel, generally? My other basic / non-GPA specific blood work is just fine.
    Last edited by Randy1957; 03-14-2021 at 05:08 AM.

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  5. #13
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    Default Re: Wegners in ears

    I had some hearing loss before GPA, but lost more after, especially in my left ear. I have sinus, lung, and kidney involvement. I have been in remission about 11 years. The hearing loss has worsened over that time. I have had hearing aids for the last year and a half. They really help.


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  7. #14
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    Default Re: Wegners in ears

    I started with a sinus problem, and then my left ear started clogging. I saw three doctors about my sinus problem and they gave me the typical medications but nothing worked - when I saw my 4th doctor I asked for a referral to see an ENT - at first he did not recognize my illness - by then I was having a problem with my left ear and my right ear was starting to have problems. He gave me Prednisone for 14 days but it did not work - then I had nose surgery and that's when he discovered the granulomas in my nose. It took maybe 4 or 5 months to diagnose GPA. I hear well in normal daily life situation, but I use hearing aids during my teaching - high school. Speaking is very clear and tinnitus does not bother me. Tinnitus is not a problem for me - I have learned to ignore it. When I get home I surround myself with TV noise, or music bcs I am soooo glad I can hear. When GPA was at my worst, I could not hear a person 2 or 3 feet away from me. I am not taking prednisone anymore, but I still taking methotrexate - 20 mgs (vitamin d, folic acid, vitamin b12, calcium, bananas, and rinse my nose twice a day with budesonide/distilled water/saline). I have asked my doctor about rituxam bit he said he would recommend it only when GPA is more aggressive. Methotrexate has worked for me. I wonder what makes a person switch from methotrexate to rituxan?

  8. #15
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    Default Re: Wegners in ears

    Quote Originally Posted by Lea View Post
    = Methotrexate has worked for me. I wonder what makes a person switch from methotrexate to rituxan?
    For me, MTX worked to get my iritis controlled for an year before things flared up again and this time kidney was involved. That made my rheumy switch from MTX -> Ruxience

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