Behcet's Syndrome Society
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Hi everyone, I need some help or advice here. My eyes have been irritating for a few weeks. Yesterday and today is just driving me mad. My right eye is the worst. It's like I want to stick my hand in and rip my eyeball out. Sorry if that sounds extreme. My eye looks red and a bit inflammed, but it stings aswel. I keep blinking to try and clear it as it feels Like I have a film over it. It's gritty and driving me nuts. I had my eyes checked out a few months ago and nothing untowards going on, so that's good but I look awful and I just wish it would stop. Iv tried optrex eye drops but nothing's working. Can anyone help on this. They are not blood shot just red but VERY aggravated...Many thanks...

12 Replies


I can feel your pain and anguish! I suffer from this same thing pretty much on a daily basis. I get that same "gritty" feeling and often have clumps of dried up puss that collect in the corners of my eyelids (like "sleep" gunk-- only it will come allday long!), and I often get a burning sensation with sensitivity to the light-- it makes me want to rub and rip my eyeballs out too because they always feel bruised and battered, so I know what you mean.

After being checked thoroughly by my eye doctor, and with no sign of anything bad happening or any damage, he basically just said that this is a common symptom of Behcet's that I would have to learn to live with-- he called it "chronic autoimmune dryness". It probably has something to do with the tiny vessels swelling around the eyes also. Whatever the direct cause of it, its very distressing.

My eye doctor suggested trying a whole bunch of different OTC eye drops (just basic moisturizing ones) and continue using them long-term throughout the day to ward off the dryness. I didn't think that this would be a good enough solution, but after trial and error of about six different ones, I found one that seems to help keep my eyes feeling moist and less gritty. Only thing is that it is annoying to have to continuously be putting in eye drops.

In terms of the burning pain, swelling , and redness-- I have been given a prescription eye drop called "Patanol"-- I think its more of an allergy eye drop-- but for me it works wonders. another suggestion could be to talk to your doctor or eye doctor about a very low-dose steroid eye drop to use when things flare-up really bad. These can burn a lot at first, but then it helps to soothe the eye.

One other simple thing that I find helps is to either splash ice cold water in my eyes (except this probably just causes more problems in the long run by drying them out even more, but it feels good temporarily), and I also will put an ice pack on my face and covering my eyes. It may sound silly, but again, it really helps to comfort them when things get bad enough.

Hope you can find some relief :)



I am the same and use drops too but very often I use cold used teabags. I know it sounds stupid and looks really great!! Not !! But I find it very soothing. Just let the teabags cool and wring out but not too dry and sit back with them on your eyes for a bit. I find it tefreshing .


Hi Hun,

I am concerned that you say you had your eyes checked out some months ago and there was nothing untoward. PLEASE go and get them checked out again as things develop so quickly and you cannot be too careful with your sight. What didn't show then may well show itself now and I don't think you should be suffering such discomfort constantly for any great period of time. I have lost the sight in one eye (different circumstances so don't panic) but I would never risk losing the sight I have left so don't take any chances please. You need to see a BD eye specialist to get a true picture of what is happening and get some help. Good luck hun and take care. Big hugs xx


Thanks so much for all your help and advice. I rang for an appointment at the Dr earlier but as usual cannot get one until middle of march. My eyes are not so red today but always quite mucky on wakening and throughout the day. Feeling so fed up today with it all can't even begin to explain. If its not my eyes, its the joint pain, the brain fog, the nausea, the tiredness, it just never ends. I'm on Colchicine and there is no difference. I feel like I'm walking around in a permanent haze. Anyway, I should be just grateful for what I do have, just having a fed up time and rambling, (sorry)....thanks everyone again for all the support and time. Hugs to you all.


Just a thought........ have you thought about contacting one of the centres of excellence directly yourself ? They may be able to guide you better or get you seen more quickly than going through your GP. Take care hun, big hugs xx


Hi xandii, I haven't thought of that. I'm very new to all this and even though my gp is a good guy he has no clue 're bechets. He said you dont really get mouth ulcers so it can't be. But my neuro and rheumy seem to both think it is. I have a dentist appointment with a guy who knows bout bechets soon. I have lost a lot of teeth due to a lot of abcesses. As for the centres of exellance I honestly don't know what they do or how they can help. I don't no anything about them and don't want to trouble them for just my eyes being red and sore. I don't mean to appear dull or stupid over this but its like I've been told I have bechets and that's it. So I just get on each day and deal with things the best I can. My problems have always been more neurological so its not easy. A lot of people I have read about seem to get a lot of ulcers, whereas I don't, I get problems walking, joint pain, headaches, inflamned eyes, bowel impactions, been hospitalised for that a few times, nausea, gastro problems, headaches, genital ulcers, nerve pain, bruxism, facial palsy, I could go on. Thank god it doesn't always all happen at the same time...I just feel a bit lost at the moment. I have NEVER been a victim and carry on the bestiI can but iI am struggling mentally at the moment to be honest and feel I just want my life back...


Your sypmtoms sound quite similar to mine. I do have ulcers but for me these are not the main symptom and I don't suffer from skin problems as a lot of people do but have a lot of neurological problems instead. How long have you had your diagnosis? It may all seem difficult now but things will improve and you will find ways to deal with your symptoms and treatments that help you. Just try to stay positive in the interim.

I would agree that you shouldn't take chances with your eyes. I am going through a similar process myself. I havequite frequent episodes where my eyes become blood shot and painful. I saw an opthalmologist a few weeks ago who told me I have dry eyes and damage/ulceration to my cornea. He felt I may have Sjogern's Syndrome. My rheumatologist told me that this is unlikely though as I am not bothered too much by dry eyes (although I do have these as the opthalmologist tested) or a dry mouth.My rheumy thinks it is more likely to be repeated episodes of uevitis (although I don't suppose this explains the dry eye and cornea damage) so I now have to see a different opthalmologist for a second opinion. As noone has actually seen me during an 'episode' it is hard to know what is going on yet. It needs sorting though as I have had 13 episodes in 12 months so if it is uevitis I need some treatment before my sight is damaged.

I think it is important for you to get someone to check your eyes when they are sore. If you have dry eyes I have now found that it can damage your cornea and I was warned by the opthalmologist that if I didn't use the drops and let the damage continue it may lead to sight problems that won't improve as the corneas are scarred. I have some sight problems now but have been told the cornea should heal with no lasting damage, but please don't leave it too late.

Good luck



Hi Pheobe,

The centres of excellence offer a telephone helpline service to BD sufferers, GPs and anyone who is concerned about BD. I don't know where you live so here are the helplines for all the centres : Aintree, Liverpool 0151 529 8123 nurse Denise Price

Birmingham 0121 507 4243 nurse Debbie Mitten

London 020 377 7677 nurse Sally Tillet

Call the one you are nearest to and ask for some guidance. I guarantee you they will point you in the right direction and do something if they think there is an immediate need. If it were me I would go straight to the organ grinder and skip the monkey for something that is giving you so much trouble. That is why they have set these centres that BD sufferers have a point of contact directly with those who know about the disease.After all, what may seem like a trivial start could possibly escalate into something more very quickly, please don't take chances, your eyesight is too precious.Take care hun and let us know how you get on. ttfn, big hugs xxxx


Xandii.....Thank you very much for the information and advice, its very kind of you. Nice to know some help is there. I live in Nottinghamshire so Birmingham or London would be good for me. Thank you again, I hope you are ok, big hugs...


Hi everyone, just thought I would give a quick update in regards to this thread. I insisted on seeing my Dr sooner than March as my eyes were driving me nuts. I saw him this morning and he tells me I have Blepharitis. (never heard of it), however he says the eyes are inflammed and a bit mucky so he has given me an antibiotic drop for them. He also said it might not be a cure and if it hasn't helped in four days then I have to go back and see him. Is this a common symptom of Bechet's ? Has anyone else had this and if so does it usually go with antibiotics?,,,Thanks to everyone...x


Im with blepharitis and i don’t have sjogren. Is it common in Behçet?


I have blepharitis a lot and it isn't necesarrily connected to behcets except another condition of Sjogrens is connected, which has dry eyes, nose and mouth etc. Sjogrens is another autoimmune condition and people with sjogrens suffer with blepharitis a lot.

I have been told to use baby shampoo [1 drop] in warm water and use a cotton bud to wash the eyelashes evey day. I also add 1 drop of tea tree oil to the water but this is my personal choice to add it.

I also use moisterising drops/ointment from the Doctor...ointment at night and drops during the day.

This helps to get rid of the muckyness and stops it from occurring so much.....Mine is particularly bad in the winter maybe because of central heating and car blowers drying you out.

I do use antibiotic drops when it really gets bad but since I have been washing the eyes and using the moisterising, I haven't really needed antibiotics.

I hope your antibiotics work for you



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