autoimmune disease of the ears

[BellaSarge]

Does anyone have GPA only in their ears?? I have ear pain, tinnitus, and muffled ears. On Methotrexate and Prednisone and it is just getting worse. Rheumatology says ENT will fix it and ENT says Rheumatology will. Been on treatment for almost 3 months.

[AmyS1]

Maybe it is relapsing polychondritis a type of vasculitis. It often starts with the ears but is very rare.

[Grannybean in reply to AmyS1]

My GPA started in my ears 2 years before I was finally diagnosed. It was treated simply as an ENT problem (grommets inserted, which fixed the immediate problem of deafness), and only spotted when it nearly took out my kidneys. If you've been diagnosed on ears alone that's good as it may prevent it hitting any more vital organs but as AmyS1 says, it's important to see a specialist. The normal treatment is a strong immunosuppressant (usually Cyclophosphamide or Rituximab) backed up by steroids and milder immunosuppression once the disease has been kicked into remission.

[AmyS1]

If you have been diagnosed with vasculitis are you being seen at a specialist centre. It often takes more than steroids and methotrexate to fix it.

[whitefishbay]

I had muffled hearing in my right ear....finally had it checked out and turns out it is a vestibular schwannoma (diagnosed after MRI). Glad to hear you are being seen by ENT Dept.

[Fleen]

I started with my hearing getting worse, muffled, then lost 70% hearing in both ears. Had grommets inserted and now wear bilateral hearing aids. Talk to your rheumatologist and ask for a audiology referral

[yogarita1955]

hi yes when I started with vasculitis I wend deaf was treated for glue ear for 6 months had grommets in as the specialist did not think it was GPA never entered his head

then I became very ill and in hospital thay realised what it was I had holes I'm my eardrums sounds horrible but I had so much pressure

still after 3 years have ear problems but nothing like the beginning ritixamab sorted me out are yo working with any chemicals ?? don't think it helps I was working with a girl with a nail bar very strong smell hope it helps

[Mooka]

That sounds painful. Have you seen this

vasculitis.org.uk/living-wi...

[Hidden]

My GPA started with my ears, specifically my left ear with an infection. Pneumonia after that. Four months and four doctors later, no diagnosis and then my kidneys failed. Today, I have tinnitus and patulous eustachian tube on the left side. Very irritating. Have you been tested for ANCA?

[irishponies]

Hi BellaSarge, Regretfully, I have similar ear issues and doctor issues (primary care to rheumy). After the typical months of being a patient ping-pong ball, I finally got some help. Thankfully, I found an ENT nurse practitioner that is very helpful. I will not give you all of the horrible symptom details, you know most of them and are living them. I did have the added bonus of burst blood vessels and blood clots in the ears. Big fun. The right ear is now deaf but Lefty is going strong. My friends tell me that when they talk to me that I tilt my head like a dog hearing a high pitch noise. Anyways, the ENT suggested trying the non-prescription brand name nasal spray allergy product Flonase (An off label use) to keep the Eustachian tubes open. (I do not have allergies.) This works amazingly at reducing the pressure in the ears. Flonase has reduced the number of ear infections from constantly for 2 years to none for a year. I do not know if my suggestion will help but I sincerely hope I was not an irritant. Take care.