Wegners in ears

[jmq]

I would like to hear of Weggies out there who have had Wegners impact their ears / hearing.
I've been in remission for about 3.5 years (after Rituximab infusion) and things seem to indicate that I'm now having a flare up. But the Dr. is not convinced and neither am I.

Had COVID in December, and a month later started having ear and throat pain, headaches. They treated me with antiobiotics and prednisone packs and while on the medication I felt better but then it would come back the next week.
Rheumy did the bloodwork and all the ANCA markers shoot up. They were quiet before. So, it seems that Covid may have taken me out of remission.

However, no other organ involvement, at the moment. Kidneys and lungs are fine. Just ears and my neuropathy seems a bit more intense than usual.
I have pain, pressure and ringing in my left ear all the time. Vertigo as well. Right ear doesn't seem to be affected, although it all started on the right side but then went away.
Dr. suspects Wegeners although he is a bit puzzled but prefers to be conservative and has ordered a Rixuence infusion.

He has sent me back to the ENT to find out if I have sensory neuro hearing loss. He thinks that would be more indicative that Wegeners is attacking my auditory nerve.
I haven't heard that much about Wegeners impacting the ear canal or nerve without sinuses. Or maybe it's because it's just starting to brew and that's where it has decided to start this time? It's so hard to tell.
All I know is my ear problems persist and nothing seems to help. I'm on 20mg of prednisone right now because I refuse to go higher. I am trying to withstand as much pain as I can to avoid higher dosage of prednisone.
But I am not sure how much longer I will be able to wait. Ruxience infusion is ordered but has not been scheduled. In any case, that takes 4-6 weeks to do anything so there is still a long road ahead to recovery.
So, if you anyone of you out there had impact in your ears, please share your experience. Would like to compare notes.
Can I loose my hearing?

[Pete]

Hearing has been my most pronounced ongoing GPA issue. Before disease onset, I had tinnitus (high pitch squeal) and some hearing loss due to environmental causes (military and worked in steel mills and foundries).

My first GPA symptom was an infection in my right ear that would not resolve with the conventional treatment. Over a span of two months, I had the eardrum lanced twice and a tube/grommet installed. My initial GPA treatment was 100-150 mg/day of oral cytoxan, 60 mg/day of prednisone, and bactrim 3x weekly. My doctor also suggested that I take an antihistamine and a decongestant daily to reduce sinus secretions. I’m off prednisone. I get rtx twice a year. I still take bactrim, loratidiene, and phenylephrine. I can’t take pseudo-ephedrine because of side effects.

Current status: I have about 40% senso-neural hearing loss in both ears. I wear hearing aids. They help except in noisy environments where it’s difficult to sort what I want to hear from everything else. I get a lot of wax buildup in my right ear that the ENT PA clears periodically. My right eustachian tube malfunctions from time to time. That results is either the sensation of a plugged ear canal or the feeling that my middle ear is open to my mouth. I see the ENT doctor once a year now. I see an audiologist for hearing testing and hearing aid matters.

Hearing aids are (for me) an imperfect and expensive solution. Mine cost over $6,000 for the pair when I got them about ten years ago. I lost one while on vacation in Europe, and that was financially painful as the replacement added to the cost of the trip. As a consequence, I don’t use earbuds. I use headphones when listening to music through my phone.

Hope this helps. If you have more questions, ask away!!

[drz]

I use a BAHA on side that lost hearing and balance mechanism and a BTE model on other side that has some hearing but no middle ear mechanism. I have a long history of ear and sinus problems long before GPA wiped out my hearing and balance.

[jmq]

Thank you sharing Pete.
So losing some of your hearing was a direct cause of Wegeners?
So whatever hearing loss I have now, it won't come back because it damaged the auditory nerve and it will continue to damage it until I control the disease?

[jmq]

What is a BAHA?
Is that something that will make your ringing noise go away?

[Pete]

BAHA=bone anchored hearing aid

Rush Limbaugh wore them.

[drz]

What is a BAHA?
Is that something that will make your ringing noise go away?

It helped me by masking the tinnitus with other normal sounds. i was told that much of my tinnitus was the result of the brain creating some stimulation because of the loss of outside normal sound. My tinnitus seems to come and go but is usually the worst when my hearing aids are off. Or it is easier to ignore when I have normal outside sound to focus on.

[jmq]

Thank you for the info. I have another ENT appointment next week. Want to be able to ask intelligent questions. :scared:

[Pete]

Thank you sharing Pete.
So losing some of your hearing was a direct cause of Wegeners?
So whatever hearing loss I have now, it won't come back because it damaged the auditory nerve and it will continue to damage it until I control the disease?

Answer to your first question is yes. The answer to your second question is beyond my body of knowledge.

Good luck!!

[annekat]

Thank you sharing Pete.
So losing some of your hearing was a direct cause of Wegeners?
So whatever hearing loss I have now, it won't come back because it damaged the auditory nerve and it will continue to damage it until I control the disease? I had similar problems as Pete did, with the ears being first to be affected by Wegener's. That was followed by 2.5 years of supposed sinus infections, allergy shots, etc., before things got so bad that Wegeners was tested for and diagnosed. I had both types of hearing loss, the conductive and the senso-neural. I got hearing aids before dx and the ears did improve some without the aids, though one later got an outer ear infection that eroded my ear drum and the little bones behind it, thus mostly destroying the hearing in that ear. So now I just wear one aid, in the better ear, as the other needs too much correction. To answer your questions, 1) yes, my hearing loss is fully the result of Wegener's, and 2) If I had been treated for Wegener's in a timely fashion, my hearing loss may have been negligible, I may have avoided the nerve-damage and once my ears became unplugged, my hearing may have come back completely, or almost so. Interestingly, the ear with the nerve damage is now my good ear, and actually did improve some with WG treatment, though still needs an aid. Unfortunately, the ear with no nerve damage ended up being my bad ear which barely hears, because of the outer ear infection and the damage it caused. I have heard of people whose hearing has fully returned, though I don't know if there was nerve damage in those cases. I assume their treatment was much more prompt than mine. The thing to keep in mind with Wegeners is there are many possible scenarios and no two cases are exactly the same. You may find out there is more chance of regaining at least some of your hearing than you think. I hope so.

[mishb]

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.

[Randy1957]

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.

[Arleta]

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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[Lea]

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?

[shankxonline]

= 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