Eye problem : Has anyone ever had issues with... - Behçet's UK

Behçet's UK

4,995 members4,254 posts

Eye problem

Mom_of_5 profile image

Has anyone ever had issues with ulsers inside your eyelids?

5 Replies

I’ve only had one behcets flare about two years ago (touch wood) and I did have a couple of ulcers under my eyelids then.

I have had many eye inflammations on the external parts of my eyes. They were never labeled ulcers, But, I recall my mother being told she had ulcers on her eyelids. These were treated, a one time thing for her. Unlike my eye issues, I was born with inflamed eyes, and this was at its worst during childhood. At 25 years old I had a bout that incapacitated me for three weeks, very painful. Since then, I am now 74 years old, things never got as bad again. I still have swelling, with some redness, many times a continued feeling of having sand in my eyes. Compared to the misery of my childhood, it’s tolerable, though often uncomfortable. I have never met anyone with the same condition with their eyes. I do get mouth sores, less now than in childhood. I consider myself lucky. I’ve have a handful of skin bumps, weird infected lumps, but that is all. My eyes, mouth sores, sinus infections, and fatigue has plagued me. I have great sympathy for those on this list who have described conditions that sound simply awful. I have lived my entire life never knowing how my eyes will be when I wake up in the morning. This causes anxiety that remains my constant companion. I never know which direction my health is headed. Even after decades of lessor symptoms, I still know things can turn for the worst at anytime. Still, I have deep gratitude for remission of the worst of the worst of my eye pain, and mouth sores. There were many at once, very painful. I found a doctor who relieved the pain of these sores by dabbing a mild solution of silver nitrate on them. It worked like a miracle. The medical profession does not seem to take mouth sores as seriously as they should. I wonder why not? Can a group like this demand action? I hope so.

I actually have something happening on my eye lid that my dermatologist is having me use an ointment with antibiotic and steroids in it. It's helped a lot as far as the pain and inflammation but hasn't resolved yet. If this doesn't work I will have to go to a special ophthalmologist that deals with surgery of the eyelids. Can't think of the name he called them. We are afraid it will cause issues with being able to close the eyelid if they have to excise it.

I have a condition on my optic nerves called Drusen that I have to see a neurological ophthalmologist every 6 months that causes blind spots in my vision. I was diagnosed with it when I was 23 and I am 54 now. I have no peripheral vision in either eye but it has remained relatively stable all these years. Also because of taking Cholchine I have to get it checked and I noticed at my last appointment that my vision in my left eye was weird which is the same eye that I have the ulcer on the eye lid. He sent me for MRI of the brain and of the orbital and thank God it came back normal, so he chalked it up to the Drusen causing the issue. I showed him the ulcer and he said it looked like stye and to hot pack it which I had been doing and nothing would bring it to a head. Anyway, I had an appointment with my Dermatologist because I had several areas of skin that needed to be checked for precancerous growths that I have been getting and he burns them off and I had him check my eye. So, as I said above, he is having me use the ointment for a few weeks which really isn't making it go away although it doesn't hurt as much.

The issue with my vision in my left eye is driving me nuts though because I see a line down the middle and blurry. Not sure how else to describe it. I have to go back for a recheck next month and I am going to ask him about the eye condition (can't think of the name at the moment) that some get because of the Behcets and see if that is what is going on. The other thing I forgot to mention is that he said my cornea's had dry spots, so I now have to put drops in 5 times a day and I was already doing the steroid drops to the eyes for years too.

Has anyone had issues like that?

In my eyelid had another one but the ulcers like others just shrink away when ready don’t come to a head. My dr gave me antibiotic eye drops and back in low daily size of prednisone. Not sure which helping but going away.

Yes, many times, on the underside of the eyelids. Go on prednisone when it happens.

You may also like...