has anyone experienced redness, swelling, burning and itching of the eyelids. This is a new symptom I have been experiencing since March and had a small flare last year.
My eyelids are very red swollen and generally driving me crazy. I feel like I have burns from it. My actual eyes are completely fine and been checked.
Any suggestions?
I am on
Tacrolimus and colchicine
Hi I also suffer with issues around the eye causing swelling and a rash. I am on TNF injections.
Not sure if you have changed anything with your dose of medication or how long you have been taking it. Sounds like you may be have a reaction to Colchicine. I had a big toxic reaction to this drug that started out with itchy eyes and skin, gradually over a period of time got much worse, eventually through intervention from my the consultant I was told to immediately stop taking it and get blood tested. The enzymes in my liver had gone overboard from the Colchicine, despite not having a very high dose, the numbers were in the 300's instead of teens. Took 3 months to get these back into normal range. Colchicine now in my notes as having an allergic reaction too and not to be administered again or drugs containing this.
First thing you may want to try, and an easy fix is try a few days of antihistamines. Many people take antihistamines whilst on Colchicine because of slight reactions which generally settle down. The heat can increase reactions. Also get some Hypromellose eye drops which will make your eyes a little more comfortable.
Colchicine is great for absolutely lots of BD people, others have a few issues every now and then and other people like me just cannot tolerate it, despite my initial success with the drug.
If nothing changes get in touch with your consultant and GP. Good luck.
Currently on hold to the doctor .. the usual! Will also try to get in touch with rheumatology because I started tacrolimus 12 days ago and can’t tell if it has made it worse… or it is just worse.
Unfortunately I had the eye swelling prior to starting colchicine. I get it on one eye upper eyelid and other eye lower eyelid. I also had it in a flare up before but hadn’t associated it with the flare.
I read that radh, itching and swelling can be a side affect of the tacrolimus, maybe this and Colchicine do not like one another. Is the tacrolimus a cream / gel or tablet. What part of Behcets have you been prescribed this for?
I would urge you to stop both tacrolimus and colchicine. Documented that both tacrolimus and colchicine taken together may increase blood colchicine levels quite high. You really do need a blood test to determine this. Persist getting hold of the consultant, mine turned around within one hour if getting in touch advised to cease taking immediately. I was given a GP appointment the same day for blood test. The consultant emailed me and told me to take the email straight to the GP's. Bloods tested twice weekly for a month, then weekly for 2 further months.
Might the discomfort++ be caused by Blepharitis?
nhs.uk/conditions/blepharitis/
I have Dry Eye Syndrome & have this common condition.
I ease it by using an Eyebag. See pg 3 of the following leaflet....
esht.nhs.uk/wp-content/uplo...
Hope this helps,
Budapest
I understand, try and keep calm, get some Hypromellose eye drops to sooth your eyes for now and rest. Hopefully by Wednesday your blood results will be back. They never prescribed me anything it had to work itself out. I did take antihistamines to calm my irritating down which helped. Xxx
Please make sure you request a copy of your blood test results. It is important that you keep a record of this for future monitoring. It will help you going forward knowing what is right and wrong. The only thing Dr's are interested in is the result is within normal levels. My own levels after this episode and whilst put on Azathioprine were on the line but they still happy for me to continue until such time infections started to creep in and eventually again told to come if this drug immediately too... I blame colchicine for my drug reactions, my bloods had been fine before taking this and having a bad toxic reaction.
Just an update! I was seen by rheumatology and I now have tapering steroids. They think I have had a flare of the eyes because I was on two weeks of steroids which were stopped and then a two week wait to start immunosuppressants without any tapering of the steroids.
I hope this will give time for the immunosuppressants to take effect. I kept all my blood work thanks for that tip!
Yes. I have had red, swollen, eyes. I was born with it. Ice and cold packs reduce the issue, saline drops might help itching. The small blood vessels become swollen. I am 77 years old, Bechets is the only disease that gets better with age. Remissions are longer. My eye sight was not impacted, The Baptism video that was taken one month after I was born, shows the condition. It is cyclical, and affects the external part of the eyes. As a child doctors called it “conjunctivitis” which simply means eye inflammation. Most discussion of eye problems and Bechets address uveitis that causes scarring that can lead to blindness. . I am grateful I do not have it, My eyes have been very painful on and off. There is usually a level of discomfort operating. I cope with it, it creates anxiety. I refer to it as, “my split screen life.” There is a level of discomfort operating a lot. I push myself to live as normal a life as I can. Right now, mouth sores, apthous ulcers are painful. I had a doctor who zapped them with silver nitrate solution she preparers herself. She retired at 98 years old. The Bechets specialist said, she was essentially burning them off. It was great, pain gone instantly. People on chemotherapy sometimes get mouth sores. No treatment for them. Something painful that can be relieved continues to plague people. There are not enough of us to call attention to this issue. My guess, it is related to the gastrointestinal system. Good luck with your eyes. M. Matta
Hi, I got diagnosed with Behcets about 5 years ago , tho have had symptoms for over 10 years. About 3 months ago I started getting red swelling around my eye and eyelid with a strange sensation also just one of my hands swells up.
Hello there YES! I have persistent problems with eyes lids and around my eyes. I still have slight swelling underneath one eye, and I get a lot of visual disturbance, blurriness shadows etc, so Ive been put on eye day cream and night - not doing much though to help irritation, but like you they say my retina etc is fine
best wishes
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