“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.
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.
So many questions
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.
Second opinions and first symptoms
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.
It’s all connected
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.
Fast forward a year
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!