Anyone get Eyelid sores?: Last two flare up I... - Behçet's UK

Behçet's UK

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Anyone get Eyelid sores?

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Last two flare up I got sores on my eyelids (no uveitis or eye problems). Red lesions, puffed slightly, itchy, annoying feeling. After about 2 weeks they'll go away.

In all my reading I've only found one other person who had eyelid sores with Behçets. I was wondering does anyone else get this, sores on eyelids during flareups?

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12 Replies
mamaphilosopher profile image
mamaphilosopher

I had several episodes of something like that late last year, right before my diagnosis changed from rheumatoid arthritis to Behcet’s. My eyes were swollen and red, the lower lids had places that appeared to be infected, and stubborn chalazions developed underneath the upper lids. The chalazions were sort of like the sores in your photo but slightly larger in diameter. The frustrating thing was that my eyes didn’t respond to any kind of antibiotics. The ophthalmologist I started to see explained that with Behcet’s the eye can look like a bacterial infection but it’s actually the vasculitis. I used a lot of heat treatments, really warm, clean clothes over my eyes until the worst of it passed.

But I’m due back to see my ophthalmologist because I’m having an increasingly difficult time focusing, my eyes feel swollen, and there’s a general discomfort even when I go without contacts. My eyes are incredibly dry and my doctor suggested that chalazions and sores are more likely to develop when there isn’t enough moisture.

I hope your situation improves!

Alex97 profile image
Alex97

I've had a lot of problems with my eyes that starts with blisters on eyelids that have then spread all over my eye and face. Epithelium in eye also involved. Happened on numerous occasions and hospitalised and given IV antibiotics that didn t help. My opthamologist and rheumatologist decided to try IV steroids and increase my infliximab from every 8 weeks to every 4 weeks and I responded to this very well and eyes have healed well. Hoping this is the last of this... well at least until next flare! Attached photos

Alex97 profile image
Alex97 in reply to Alex97

I can t work out how to add photo so I'll put in new post

pete11 profile image
pete11

Hi yes I ulcers on eyelid and also inside the eyelid which if you go to my last post there is a picture of my ulcer in my eye. I also have a big bruise comes up around my eye. There very sore.

Dan_NY profile image
Dan_NY

Not on my eye, but this looks like what I used to get on my abdomen, sometimes on my fingers, and penis. Mine were not quite that thick. Spread out much more. I don't have a ton of eye involvement but was also diagnosed with RA.

Neldine profile image
Neldine

Yes, yes and heck yes!

Syndome123 profile image
Syndome123

I've got very red, sore itchy eyes and swollen x

Syndome123 profile image
Syndome123

At present my eyes are very sore 😔

When I wore makeup yes. I stopped so I don’t now.

JollyHS profile image
JollyHS

Hello there , not sure if anyone will see this as the post is 5 years old but…. I’ve just started having sores very similar to this on my eyelid. I initially thought it was a reaction to taking propranolol for migraine but this is my second time on it and I had no skin issues the first time. Just wondering whether you were on propranolol when you experience this and whether the sores have been an ongoing symptom for you. Many thanks. JHS

5Moonraker0 profile image
5Moonraker0 in reply to JollyHS

Hi there, I'm new and struggling to get a Behcets diagnosis, in fact I have been laughed at, gawped at and sneered at. But I digress, I had those types of sores on my eyelids and my ophthalmologist said it is a condition called Blepharitis. You can get special eyelid wipes for this condition which helps a bit and a warm cloth/flannel can offer a bit of relief. If its any consolation, the UK quiz show host Bradley Walsh suffers from Blepharitis and people thought he was a drinker due to sore, red eyelids. Hope this helped a bit.

JollyHS profile image
JollyHS in reply to 5Moonraker0

Hi 5M0, thanks for replying and sorry to read you have had a difficult time. Are you in the England, have you asked your GP for a referral to one of the BD Centres of Excellence? I don’t think it is Blepharitis. My eye is not particularly swollen and not at all itchy. In fact I felt little discomfort until I touched it, that was very painful. It was rather similar to an ulcer in that respect which is why I would say it’s Behcet’s related. Best wishes, JHS

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