Chronic Follicular Conjunctivitis (no known cause)

Posted by karinab1970 @karinab1970, Aug 28, 2023

Wondering if anyone has any thoughts.

I have had follicular conjunctivitis since April with no known root cause and it does not react to steroids or antibiotics, drops or oral route. Started with half a red eye, then spread to both. No other symptoms initially. Then developed chronic periorbital edema. 10 weeks after onset was diagnosed with EBV. A few weeks later, rhino virus and pneumonia. My immune system is taking a hit but they no do not think it is autoimmune. Misdiagnosed a few times (allergies, allergic conjunctivitis, autoimmune disorder), eye doctor does not know but rheumatologist does not believe it is autoimmune related. Waiting on labs, then to an eye specialist in Miami. Over four months already. Any thoughts??

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casey1329 | @casey1329 | Aug 29, 2023

Yikes, looks bad. My husband had clogged eyelash glands and eyelashes or two that grew into the eyeball. The doctor pulled out the eyelashes and told him to put warm compresses on his eyes twice a day. Then I read someone used baby shampoo too. So he started washing his eyes with a warm wash cloth & the bay shampoo in the shower and it seemed to help. I have know idea if this is what you need but thought it wouldn't hurt to mention it...good luck !

karinab1970 | @karinab1970 | Aug 29, 2023

Wow that sounds painful! I am hoping he is way beyond that now?! And yes, it is horrible....over four months now with no answers. Thank you for the suggestion. I will try it for relief. Appreciate the response 🙂

sb4ca | @sb4ca | Aug 29, 2023

Do you get vision loss when this happens. Halos around bright lights?

karinab1970 | @karinab1970 | Aug 31, 2023

In reply to @sb4ca "Do you get vision loss when this happens. Halos around bright lights?" + (show)

No. And it’s chronic, all day every day. I’ve had flashers and floaters tho since my 30’s. I’m in my 50’s now.

krisshan1 | @krisshan1 | Feb 4 4:13pm

I have Follicular conjunctivitis been dealing with it since May 2023! I have been on steroid eye ointment and 50mg of doxycycline twice daily. It helped at first but now it doesn’t! My eyes water constantly to the point my makeup is gone within a hour! Have you had any luck with a diagnosis I’m also 52!

krisshan1 | @krisshan1 | Jun 14 9:17am

Was wondering if you had any updates on your condition? I too was diagnosed with follicular conjunctivitis no known cause and I did will with steroids for awhile but once off of them my watery eyes return and now the steroids don’t want to work! I have had a biopsy done and everything comes back clear!!

annebw | @annebw | Jun 15 4:07pm

I had some kind of conjunctivitis in one eye around 2021, but the doctors wouldn't swab around under my eyelid to test for any infection. Had conjunctivitis, puffy eyelids, eye pain. I don't think they ever determined a cause.

elisabeth007 | @elisabeth007 | Jun 16 12:48pm

In reply to @annebw "I had some kind of conjunctivitis in one eye around 2021, but the doctors wouldn't swab..." + (show)

i had a severe eye infections years ago and my opthamologist tried numerous oral and local antibiotics . my eyelid was so swollen i could barely see. Finally, a friend who is a dermatologist suggested i see my dermatologist. My dermatologist biopsed and cultured my eye lid and prescribed an old wide spectrum antibiotic. Within days the infection was gone