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Autoimmune Disease and hearing loss reversal

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Hi there,

I’ve had a hearing loss of 34-40 decibels as my “starting” level when I first got tested. Then over a period of several years; I would have sudden drops of hearing, only to have it come back up but would leave me with a 5-8 decibels invreased loss from my baseline.

It got to a stage where I was sent for Osia trial and then when it hit 75 decibel I was sent for Cochlear Implant. Luckily I never went forward.

About 18 months ago I got sick and they put down to autoimmune and I was treated with IVIG…… I slowly noticed my hearing being a small bit better. Then this spring I got sick again and got IVIG again. Which the head aches etc I stopped wearing my aids and then went to a stage where I just never put them back in.

I went for hearing evaluation this week. Why base line has gone to 45 decibels WOW……. They advised I should still continue wearing aids but I’m worried to do that. What if they are getting better without the help - can the aids mess it up? I’m only struggling in noisy environments and not sure if worth the risk?

Has anyone ever had or come across anything like this?

Unfortunately, I haven’t been tested to prove any of the following. This is my observations which may be of similar response to drugs acting upon the body in a similar manner…

  1. Due to permanent kidney failure, dialysis and so on, I received a transplant at age 23 - while I had precision hearing.
  2. That transplant rejected after 15 years. About the same time I noticed the first signs of background hissing when in a very quiet environment. I was told it was simply the anti rejection meds so the issue may go away after stopping them.
  3. I found the hissing and distant ringing would be present approximately 30-40% of the time, completely gone the majority of the time. This issue progressed over about 15 years to faint background noises 100% of the time.
  4. In a search for a new transplant, I fought 100% antibodies, using every standard method available, including IVIG. They didn’t work on the stubborn antibodies yet I felt better and noticed slight hearing improvements after IVIG infusions.
  5. I was invited into a two year study using cancer drugs to lower difficult antibodies. During those two years my hearing changed dramatically, the problematic hiss and ringing began dominating my background hearing. I mostly lost high frequency hearing. After hearing loss tests then purchasing hearing aids I still had issues understanding speech in all but the quietest situations.
  6. 20 years after transplant rejection, I received a second transplant, new anti rejection meds and new chance at life. In order to prevent return of the antibodies then another rejection, I’ve been receiving Actemera (yes the rheumatoid arthritis infusions). I find my hearing dramatically improves for about three days then gradually settles back to my normal hearing loss. I do feel fragile so-to-say during the days immediately following that infusion (also when my hearing improves).
  7. Recent medical improvements indicate I may have a specific autoimmune response which creates inflammation. This information began a personal debate, wondering if the inflammation is actually part or all of the overall hearing loss struggles?

PS - my sister (who donated the first transplanted kidney) has a similar issue with autoimmune response. She also has the exact same kind of hearing loss. We have extremely similar genetic markers, more so than our other siblings. Our father has the same kind of hearing loss, which is severe at age 80. It appears our hearing loss / immune response is genetic.

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