Sjogren's and Ear Pain: I thought it was just me

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My ears have not been my friends, especially over the last two years.  I have had ear infections, chondritis, severe and debilitating ear pain and noise sensitivity that made it almost impossible to leave home on many days.  It was just last week that I had a double ear infection and luckily antibiotics did the trick.  As a result of my unhappy ears, I have often looked for a good source of information about Sjogren’s and ear problems and have not found a wealth of information.  However, the recent The Sjogren's Book (which I highly recommend) does have a brief summary by Dr. Soo Kim Abboud of the ear manifestations of Sjogren’s that packs in some important information.  Here are the highlights:

Hearing Loss - Sjogren’s patients are more likely to develop hearing loss both as a result of physical problems with the ear such as the ear canal called conductive hearing loss or problems with the nerves of the ear called sensoneural hearing loss.  Autoimmune hearing loss is a type of sensoneural hearing loss that happens when antibodies attack the auditory nervous system and is usually treated with steroids or other immunosuppressants.

Ringing in the Ears - Also known as tinnitus is more common in Sjogren’s patients especially those who have had nerve related hearing loss.  The reason for the occurrence of ringing in the ears in Sjogren's patients without hearing loss is unknown.  In these patients, biofeedback therapy or noisemaskers are sometimes used to help.

Ear Pain - This was a shocker for me – “As many as 25% of Sjogren’s patients have ear pain”. As someone who suffers from ear pain, I have seen many doctors and they have seemed surprised at the pain or view the pain as disconnected from my Sjogren’s.  So I found this extremely interesting.  While saying a link between Sjogren’s and the cause of the ear pain has not been formally established, Dr. Abboud does discuss two possible causes.  These include:

1)     Dryness in the upper airway causing dysfunction of the eustachian tube, which is responsible for equalizing pressure in the ear.  Eustachian tube dysfunction can cause a number of symptoms including “ear pain, hearing loss, fluid accumulation, and  even infection”.   According to Dr. Abboud, depending on its severity treatment can range from using a nasal steroid and saline to antibiotics to ear tubes.

2)     Relapsing polychondritis is an autoimmune inflammation of the ear cartilage (it may also affect the cartilage of the head and neck) that can cause ear pain in addition to redness and swelling.  This is usually treated with immunosuppressant medications.

After seeing four Ear, Nose, and Throat (ENT) specialists over the last couple years, I have not been able to find one particularly knowledgeable about autoimmune disease.  Right now, I rely on my rheumatologist, neurologist, and allergist to deal with treating my ear symptoms.   I do hope that there will be more medical research about the connection between Sjogren’s and ear-related symptoms.   Have you experienced ear problems related to autoimmune disease and was it hard for you to find proper treatment?