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Anyone else have Cogan's Syndrome?

Posted by cindylb @cindylb, Oct 25, 2023

I have recently been diagnosed with both Sjogren's Syndrome AND a rare autoimmune condition called Cogan's Syndrome. I'm trying to manage the Sjogren's symptoms and it's going fairly well...not so much with the Cogan's (which attacks both eyes and more the ears, causing deafness in 50% of those with the condition).

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Becky, Volunteer Mentor | @becsbuddy | Jun 30 10:10pm
In reply to @derincyr "I was recently diagnosed with Cogan's syndrome. I had uveitis 4 years ago with my first-ever..." + (show)
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I was recently diagnosed with Cogan's syndrome. I had uveitis 4 years ago with my first-ever dizziness episode. I had two major episodes of uveitis and dizziness, which resulted in hearing loss in both ears. For the last four years, my hearing has gotten progressively worse. I now have profound hearing loss in both ears. I learned today from a PET scan that I have inflammation in my aorta too. I've been on 20mg/day prednisone 25mg/week methotrexate. I tried mycophenolate as well as Kineret daily injections. We haven't been able to find a medication that works for me.

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@derincyr Welcome to Mayo Clinic Connect! I’m very glad that you found the group and will be able to share some information and get some new info that might help you. The posting from @JustinMcClanahan , just above yours mentioned 2 resources that you may find helpful.

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