Does anyone out there have any experience with Autoimmune inner ear disease (AIED)?

[Serser]

Hi all,

I’ve had problems with my ears and hearing all my life. I’ve had an adenoidectomy, sinuses corterized, multiple grommets and t-tubes, Patulous Eustachian Tube (PET) and most recently what I was led to believe was Mastoiditis (basically chronic infection in the bones behind both ears), requiring a surgeon to cut the ear open and remove the diseased bone-I’ve had this op done 4 times on each ear to date. As a consequence of this I’m now on the waiting list for a hearing implant on my right side.

Last week I saw a different ENT (ear, nose and throat) who thinks that I may never have actually had Mastoiditis!! He suspects that my SLE has been the cause (and continues to be the cause), for the feeling of pressure/fullnesss/tinnitus/ringing and pain I feel as well as the cause of the diseased bone and overgranulation that seems to form there. He thinks I may have something called Autoimmune Inner Ear Disease or AIED. It’s stressful as I only had each ear opened up in December last year and March of this year, but already the pain and horrible symptoms have returned.

I have been referred to a professor who specializes in ears - I see him next week to get the verdict.

Does anyone else have experience of AIED? I am lead to believe that it is quite rare.

My head has been completely wrecked by this as everything I was lead to believe for years and years (and been treated for) is seemingly not the case!

Treatment for AIED seems to be high dose steroids, methotrexate (some arguments to say this isn’t effective) and in some cases chemotherapy.

I’d really appreciate getting in touch with others who have had a similar experience. I don’t think there are many of us!!

Sarah XX

[Barnclown]

That’s A LOT to have managed...and your rough ride continues...i do admire your self awareness and determination + the depth of your understanding of these complexities.

For what it’s worth, my version of infant onset AID-related inner ear disease is simultaneous with chronic rhinosinusitis + early onset sjogrens dry eye + various oral stuff...most of which began 65 years ago in childhood. None of it is anywhere close to the severity of your version of this, but it has been a constant prob - especially the persistent vertigo. All this is complicated by my hEDS & PID..+ by a severe childhood injury to my cervical spine

Lucky for me all of this stuff responds pos to daily 10mg pred + myco + cyclosporin eye drops which seep into my sinuses + v conscientious lifestyle management....but my immunology chief has referred me to a sinus-expert colleague at the Royal TNE hosp (yes it’s really: Throat Nose & Ear) in london cause he is concerned about an increase in severity set off by pneumonia last spring. I see this chap in dec...so this topic is on my mind

I hope you’ll keep us posted 🍀🍀🍀🍀 Coco

[Serser in reply to Barnclown]

Hi Coco,

I’m so glad your AIED symptoms are controlled by by 10mg steroids-that gives me some hope that maybe I can get my ears controlled by that amount! I’m on 7.5mg prednisolone at the moment which has helped with my aching but not my ears. I think I need to be treated with high dose steroids for 4 weeks (I’ve looked it up in journals-this is what we do isn’t it??!!), then the dose is tapered down once inflammation has subsided.

I hope you get the answers you need in December- make sure you let me know.

I’ll certainly keep posting about my outcome/progress.

[Serser]

Hi Lou,

I really hope I get some improvement!

I’ve read that the treatment is high dose steroids (60mg daily for four weeks!!), that then tapers off. It would be so great if that would be anend tithe operations and the pain. Xx

[MGNP]

I am newly diagnosed in last 9 mos. I am My rheum has me on Methotrexate. I do think it helps my ear ringing, but not completely. I'm on 15mg/week so far. Wondering if anyone has tooth or jaw pain after hot or cold exposure. It's a daily issue for me and The Mtx is not touching it. I'm not sure if it's associated with the lupus or THE AIED or neither.

[honeybug]

xxx