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“Can You Hear Me Now?” My Story of Psoriatic Arthritis Related Hearing Loss

“Can You Hear Me Now?” My Story of Psoriatic Arthritis Related Hearing Loss

There is a reason that the phrase, “Hindsight is 20/20,” is so common. My hearing loss and its link to psoriatic arthritis is no exception. Unfortunately, this particular aspect of PsA often gets overlooked and seems to be quite unknown amongst many ENT doctors who are usually the first stop when someone experiences hearing loss.

Is this an ear infection or something else?

My story starts with ear infections, quite a few in fact that never seemed to clear up. After repeated prescriptions of antibiotics, I was referred to an ENT. I convinced myself that I simply had “water” in my ear responsible for my hearing loss. I really wasn’t concerned at all at the time. The ENT performed a hearing test and told me that I had moderate hearing loss in my left ear.

Still thinking that he would follow it up with suctioning the fluid, I wasn’t too concerned. Until his next statement, “There is no fluid. Your hearing loss is permanent. Come back in 3 months for a follow-up.” The next thing I saw was his back as he breezed out the door.

Misdiagnosed with Meniere’s Disease

Wait? What? Huh? I wanted to scream! Permanent as in FOREVER? I’m 37 years old for crying out loud! Within 2 weeks, I was experiencing hearing loss in my right ear as well. I made an appointment and was back at the ENT. He pronounced, “You have Meniere’s, here is a handout on it. Follow a low salt diet and come back in 3 months.” Again, my questions were met with his back as he walked out of the door.

Seeking out a second opinion

Seeking a second opinion, it was another month later when I was finally able to get in with another ENT. He was much more open to my questions, concerns, and medical history. He performed another hearing test upon which it became clear that my hearing loss had progressed to moderate/severe in BOTH ears. He suspected Autoimmune Inner Ear Disease given my history of Hashimoto’s Thyroiditis. The only way to know would be with a round of high dose steroids. If my hearing improved, then it was most likely autoimmune. As I’m sure you can guess, my hearing did improve. Right about the time my painful hands and feet improved. Oh, if I could go back and smack myself upside the head! Hindsight people- it’s always 20/20.

Connecting my hearing loss with PsA

Neither my doctor nor myself put together the relationship between my ears and my body. He told me had I gotten the steroids very soon after my hearing loss started, a great deal of it could have been prevented. That was kind of like a knife to the heart, knowing that had I made better choices for my care, the moderate to at times severe, hearing loss that I experienced could have been avoided. Beyond that, I would have been able to diagnose my psoriatic arthritis quicker, possibly leading to a better outcome and odds for treatment.

Treating my PsA helped my hearing loss

After quite a journey to eventually land on my psoriatic arthritis diagnosis, I began treatment. One of the first things I noticed, after several rounds of Remicade, was that my hearing improved. Never to the point of “normal” but certainly more functional. I mentioned this to my rheumatologist, thinking she would say that I must be crazy. She simply nodded her head and noted that it is common to see an improvement in hearing loss after starting Remicade.

Wait? What? Huh? Clearly there is a lack of common knowledge and communication between these two fields. I had finally accepted that my hearing would be terrible forever, purchased hearing aids out-of-pocket at thousands of dollars, and it could actually improve?!? I was shocked to say the least!

Where does my hearing loss stand today?

That is quite a question. It still fluctuates quite a bit, which makes getting used to hearing aids nearly impossible as some days I can function just fine, while other days it feels like I’m walking around with my head under water. I have come to realize decreased hearing as one of my first symptoms of a flare. The more hearing loss I have seems to correspond with the severity of the oncoming flare. Crazy, I know. If only I could go back and make different choices. I guess that’s the whole idea behind the saying…hindsight, 20/20. Wish I could say the same about my eyesight, but that’s a whole other story!

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Psoriatic-Arthritis.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • sa.soroushi
    2 months ago

    Hi, I have Meniere’s disease for 5 years and Psoriasis for more than 20 years.
    I was wondering what medications did you use when you had Meniere’s and what was your medication for PsA?

    Thanks!

  • Grace
    10 months ago

    Hi Leanne
    Update: My hearing is so bad now I’m no longer hearing anything going on a week now and I think my recent uptick of neck pains are to blame, could this be psoriatic arthritis in my neck?

    This is insane.

    Grace

  • Grace
    10 months ago

    Hi Leanne,
    I’ve had severe hearing issues off and on for over 20 years I was told 10 years ago I had meineres disease after I suffered for years with vertigo and feeling as if I’m underwater and I only recently got diagnoised with Psoriatic Arthritis 2 months ago, can you believe that.

    Im currently deaf in one ear and have only 40% hearing left in the other.

  • Leanne Donaldson author
    10 months ago

    Hello @grace, I’m so sorry that you are also dealing with hearing loss from PsA. I was also initially diagnosed with Meineres and sent home with a “low salt diet.” I am so glad that I chose to get a second opinion. When I think back to how much treatment time was wasted from years of misdiagnosis, it makes me so angry. I can’t image going for so long, not fitting in the traditional hearing loss “mold,” and without treatment for the underlying cause. I even had one audiologist claim that I was “faking” my hearing loss because it fluctuated so badly that she didn’t believe it was possible.
    Lack of knowledge in the audiological community about the relationship between inflammation and hearing is very frustrating. I did notice that when I am on a PsA treatment that is working, I notice a difference in my hearing. Hopefully you are able to find a medication that can help you keep what hearing you have left. Have you found anything that helps yet?
    -Leanne, Author

  • McFadzean
    1 year ago

    Hi Leanne, I am so relieved to read your article on hearing loss. I have known for some time that I have not been hearing well as my husband and daughters said that I kept asking them to repeat everything. After quite some time one of my daughters forced me to get a hearing test which I did and thought they would tell me that as you said fluid in my ears. Unfortunately my ears wer totally clear and was told that in my left ear I had only 40% and right ear 80%. She said that she did not think that I would have any improvement in my hearing and as there was such a difference in my ears. Because of the difference I had to get in touch with my rheumatologist to see if there was a reason for the difference. At the moment I am waiting to hear from my rheumatologist to see what she thinks. It has been a real roller coaster for me with Psoriatic arthritis. I also have Hashimoto thyroiditis which has been very hard to control. Again thanks for your post.
    Elizabeth Lidbeck

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