r/lupus•
Shenny_17

Hearing loss

Advice

I think I screwed up and I’m panicking a little.

TLDR; lost my hearing in my left ear during my first flare , and now my right ear is starting to be affected despite treatment. Looking for other’s experiences and recommendations.

For context, my first full flare was triggered in July this year. Around that time, I noticed that my left ear became blocked suddenly and I brushed it off as ear wax or something. Shortly after, I started experiencing ringing and then pulsatile tinnitus, but I was more focused on the other symptoms and pain management so I ignored it and focused on getting a diagnosis. I got a confirmed dx of SLE about a month ago and decided now to get my ear checked out by an ENT.

Problem is, at some point these past few months, my ear went from feeling blocked and echoing to feeling “blank?” if that makes sense? The ringing and pulsatile tinnitus is a daily thing that I stupidly ignored but if I cover the ear with my hand, there’s no sound or pressure in it at all. And if I’m laying on my good ear, I can’t hear what people saying with my left ear. It just sounds muffled. All of this started after the first flare but before I was put on treatment and it hasn’t improved or gotten better since (I’m on prednisone and chloroquine for almost 4 months).

I’m still on treatment but I’m noticing that for the past week, the blocked feeling and ringing is starting to come and go in my right ear now. And alongside my normal daily symptoms, my fevers are getting worse at night when sleeping. I have an appointment with an ENT tomorrow, but I wanted to know if anyone else has had this and what it ended up being for them? Will my hearing ever come back and will I lose my hearing in my right ear too?

Any help or advice would really be appreciated.

Posted Dec 11, 2025, 9:41 AM UTC

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