Hi everyone!

I was wondering about your experiences regarding ear issues.

For the past couple of years my GPA has been in remission, with blood samples all good and slowly reducing the dosage of RTX I get every 6 months. Previously I twice had middle ear infections (both ears) where no bacteria was found and a lot of ear discharge. This was never affected by RTX infusions nor steroids, but sort of "burned out" after about half a year.

In April 2017 I got another middle ear infection and again no bacteria was found and as all my blood work was excellent, the rheumatologists neither believed in it being my GPA doing it. In October though I suddenly got really dizzy, something that slowly subsided over a few weeks. A CT showed quite extensive damage in both ears and I finally got to see an experiences ear-specialist. However, before I got there I also contracted a pretty bad facial nerve paralysis on one side.

Before seeing the ear specialist we already tried increasing my dosage of Prednisone and a rather long, high-dosage course of Antibiotics. Neither had any lasting effect. When I got to the ear specialist, she believed I could have a pretty serious infection in the bone in/behind the ears, even though my blood samples nor bacteria samples from the ear discharge showed it. I was put on a strong IV antibiotics course, which seemed to help with the paralysis and somewhat the ears. I was also scheduled for ear surgery to remove sick tissue, reconstruct my ear drums and some reconstruction of the middle ears (as well as finally getting implants for BAHA). Unfortunately, shortly after finishing the antibiotics treatment, the facial paralysis came back, and we restarted the IV antibiotics. This time to no real effect... My surgery got moved up and ended up lasting 9.5 (!!) hours.

I now believed everything would finally get better, however 3.5 weeks after surgery, the doc discovered that my new ear drums already has new holes and my ears (especially the left) are still discharging. They took a lot of bacteria samples during the surgery and they all turned out negative. Therefore she believes it is active GPA causing the damages (impossible to say if there ever was an infection in addition to the GPA).

I am despairing a bit at the moment. I am already having a way too low IgG-count and am injecting immunoglobulins weekly. I just got another RTX-infusion, though at the same dosage as in July, which had no effect on my ears, and I am already on 20mg of Prednisone. I am having trouble understanding how all blood works can be so good, when my GPA seems to be causing all this damage to my ears. I have previosly been treated with CTX, Imuran, MTX and CellCept and I kind of feel like we are running out of good treatment options for me, especially if the RTX isn't working properly anymore (been getting it almost half yearly since 2010) and with my immune system being so weak... I am currently waiting for the rheumatologists to contact me, now that they are getting informed by the ear specialist that she believes I have active GPA, I am just a bit impatient in the meantime..

On a positive note: after wearing my BAHAs on a softband since April, I could finally start using them properly. The improvement from the softband ist amazing!


Does anyone else have any similar experiences, advice etc. to share with me?