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Crohn's, immunosuppressed and hearing loss

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Hi

Just wondering if anyone is in a similar boat to what I am…

I have Crohn’s disease, I’ve been on adalimumab (humira, imraldi etc) for at least 5 years. I have severe-profound hearing loss, presumed as a result of the Crohn’s somehow.

However recently (within past 18 months) I have been getting recurring, regular ear infections in both ears, and sudden unexplained deafness in one ear.

Often when I get sudden hearing loss I book a microsuction appointment to get wax removed, often to be told it’s not wax , but rather an infection.

This week in my left ear, this time, gradual hearing loss brought on by wax. I got the wax removed yesterday, ear canal is clear and no infection, but I cannot hear anything. The problem is not the hearing aids, because I can tell when it is my ears because there are certain sounds I can hear without the aids.

My queries:

  • Has anyone experienced regular ear infections like this, possibly as a result of using the adalimumab injection medication?

  • Does anyone have any suggestions as to why despite my ear being clear of wax and infection, I am suddenly near deaf in one ear, despite being ok few days ago? This sudden deafness comes and goes, it’s usually as a reault of infection, but this time seems different…

My background:

I do not swim anymore, intentionally to eliminate potentially swimmers ear being the cause of infections

Do not put anything in my ears except hearing aid mould. It’s in no more than 10 hrs a day, try to have one day a week no aids in.

Plan to speak to my Crohn’s consultant at some point. See if they can think of something.

Welcome to the forum Matt.
I’ve been on adalimumab for 18+yrs now, I don’t get ear infections but I do get frequent bacterial nasopharyngeal infections.
I’ve had a SSHL- did Humira cause it, this is unknown.

I’ve also had a couple of episodes of hearing loss in my ear. Did Humira cause these as well, this also is unknown.

Adalimumab is not listed as a known ototoxic drug

@MattB said:

Does anyone have any suggestions as to why despite my ear being clear of wax and infection, I am suddenly near deaf in one ear, despite being ok few days ago?

SSHL are a very common occurrence, where you go to bed tonight and get up tomorrow not being able to hear.

The most common explanation from Drs is it’s caused by a viral infection. I don’t know if anyone can give you a factual answer to this question.

Thanks for the reply. Did your SSHL get better? Or was it permanent ? May have to give up work if it doesn’t improve. The charts I got at audiologist showed already 90% lost pretty much across most frequencies

@MattB said:

Did your SSHL get better?

Matt my SSHL didn’t get better. I finished up having a Cochlear Implant so i could hear. It’s the best thing I ever did.

Is you hearing loss bilateral or unilateral? Give some thought to getting a , by doing this you wouldn’t have to give up work. With CI’s you have nothing in your ears, it just might help your ear infections, might not either.

Hi
The hearing loss is in both ears, left is little worse than the right. When my right ear gets an infection I can still hear well. When my left ear gets an infection like now it’s noticeably bad, either quieter than usual or like now, no sound whatsoever.

I can only assume the microsuction I had the other day has damaged the ear canal and now it’s swollen or something. No way to check myself except wait and see.

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