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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 | Oct 25, 2023

@cindylb I am so sorry that you’ve been diagnosed with 2 diseases. I understand that Cogan’s syndrome is an inflammation of both the eyes and ears. Correct? What is your current treatment? Has your doctor recommended that you see an ophthalmologist (specialized eye doctor)? I also understand that The Vasculitis Foundation is a great resource. https://www.vasculitisfoundation.org/
While we wait for other members, can you tell me how you found Mayo Clinic Connect?

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cindylb | @cindylb | Oct 26, 2023
In reply to @becsbuddy "@cindylb I am so sorry that you’ve been diagnosed with 2 diseases. I understand that Cogan’s..." + (show)
@becsbuddy

@cindylb I am so sorry that you’ve been diagnosed with 2 diseases. I understand that Cogan’s syndrome is an inflammation of both the eyes and ears. Correct? What is your current treatment? Has your doctor recommended that you see an ophthalmologist (specialized eye doctor)? I also understand that The Vasculitis Foundation is a great resource. https://www.vasculitisfoundation.org/
While we wait for other members, can you tell me how you found Mayo Clinic Connect?

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Cogan's is a 'rare' autoimmune condition that causes loss of hearing and eyesight. Yes, I'm seeing two eye specialists and also a Rheumatologist. I'm on Methotrexate right now but not seeing any improvement. High doses of Prednisone stopped both the eye and ear symptoms completely but of course, that's not sustainable. I have confidence in my eye team but not so much the ear team and my Rheumatologist quit recently, so I'm meeting with a new one mid November. I have done quit a lot of research and will check out the foundation you've referenced. Cogan's is similar to Auto Immune Inner Ear Disorder, so I'll probably hop over there as well....to look for people who may be getting treatment for that. Thank you for your support. I am a breast cancer survivor as well and Mayo has been a great place for me to get and give support. I found Mayo Connect when I was first diagnosed with breast cancer over 7 years ago. My husband also has Stage IV Cancer of Unknown Primary.....I belong to those support groups as well. Connect is a big part of my support system!

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