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    Default ear issues with Wegener's

    I am writing for my husband who has been diagnosed with Wegener's last year. It started with sinus issues that were first diagnosed as sinus infections, but, he never responded to several different antibiotics. Only when he was put on Prednisone did the issue resolve. Months later he was put on Methotrexate which he is still on and inflammation rate/levels have been normal since. He has now for a long time been experiencing ear pressure, some fluid and pain and hearing loss, but, the ear nose and throat doctors don't agree as to whether it is from Wegener's or not. One says NO, the other says Yes. His ears look fine, but, the problems persist. Is this a coincidence? and invisible problem? We are so puzzled, and he is sooo frustrated and suffering from this. His ANCA blood test showed positive even though he doesn't have all the classic symptoms, only some. Forgot to mention that in the beginning he had terrible headaches and scalp and teeth sensitivity which have been resolved by the prednisone and methotrexate. Any feedback would be helpful.

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    Default Re: ear issues with Wegener's

    GPA symptoms are very diverse and vary greatly from one person to another. Sinus infections and damage to sinus areas are very common in GPA. Blocked Eustachian tubes and ear infections are also common. I have had both in my GPA history. Hearing loss and vision loss are both serious complications that can result from GPA. I lost my hearing and balance but treatment was able to save my vision in the eye attacked by GPA. I recently had pain in my jaw that centered in one tooth. My dentist was not able to identify any cause but interestingly the pain seem to disappear when I had to do a pred booster due to other GPA sysmptoms that had flared up like nose bleeds, increased fatigue, eye inflammation, headaches, jont pain etc which are more common GPA residual symptoms.

    Finding good ENT doctors familiar with GPA and knowing how to treat the symptoms can be a challenge. There are a few ENT doctors listed on the Vasculitis site and they will consult with a local ENT doctor. Most of the Centers known for treating GPA will either have such resources or know where to refer you. If you don't have access to one of these Centers, a large Medical School facility and teaching hospital will be the next best bet to secure adequate help.


    Good luck in your quest for securing good help.
    Knowledge is power! Wisdom is using it to make good decisions!

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    Default Re: ear issues with Wegener's

    Welcome to the forum, Doris.

    In my case, mtx didn't work. And my C-anca or Pr3 are positive when my wg is active (flaring or smoldering). So I think that your husband's wg is active more or less, and needs a more serious treatment. Please consult with wg expert.
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

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    Default Re: ear issues with Wegener's

    Hi Doris,

    As said above, this disease causes many different issues and problems, I had some ear damage due to wegs, it felt like there was liquid behind my left ear, causing me to loose some hearing for a few months, it is good now, and before i was first diagnosed, I had pain travel from tooth to tooth, I had 3 fillings drilled out and many xrays, and in the end my dentist could not find a problem with any of my teeth, the pain would travel from filling to filling, It was weird!!!
    I hope you can sort it out quickly

    All the best Woz...

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    Default Re: ear issues with Wegener's

    Hi, Doris,
    Welcome to the forum, but sorry you have a reason to be here. I wrote a long reply a couple of days ago but it somehow got lost and then I couldn't find your post. Probably because I use Tapatalk on my phone for the forum. It's really better on a computer or maybe a tablet. Anyway, this reply will be more abbreviated, as many good things have already been said.

    I started by saying you should go with the ENT who said it was Wegener's/GPA, as your husband's symptoms really sound like it . Not everyone has a high ANCA reading or any at all . I didn't. My beginning stages, were very much like your husband's, two ear infections and a series of antibiotic resistant sinus infections. WG was not even suspected for 2.5 years, when my lungs became involved. I was started on one of the heavy hitters, cyclophosphamide (Cytoxan) along with prednisone, of course. I made good progress and was switched to methotrexate for maintenance, still with prednisone but in much lower doses, which has worked well for me, and after 7 years of that, am doing well, but can't say I'm in a true remission since I depend on the meds to stay well. Some get to this stage a lot sooner, and even come off the meds, and your husband could be one of those. He is lucky they caught it fairly early so he can possibly avoid permanent damage to his tissues. Methotrexate could work for him at this level of involvement, but if it went to his lungs or kidneys in the future, they'd probably put him on CTX or RTX, the other big gun drug, or both, and he would likely do well and eventually get back to a new normal, living his life close to the way it was before all this. Well, I won't go on and on, but stick with us and you will gradually gain some knowledge and familiarity about this disease. Keep us posted and don't hesitate to ask any questions, and search the archives for specific info. Best wishes to your husband and you.

    Sent from my MotoE2(4G-LTE) using Tapatalk
    Anne, dx'ed April 2011

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