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Readers Respond: Have You Ever Been Diagnosed With Scleritis?

Responses: 65

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Updated October 13, 2009

From the article: Scleritis
Scleritis is a severe, painful, and potentially blinding inflammatory disease of the white portion of the eye, or sclera. Have you been diagnosed with scleritis? Share your experience with scleritis with others, including your first signs and symptoms of the disease. Share Your Experience

Scleritis...new to me

Just been told I haves sceleritis......inflammation inside the eye. It's sore and throbs. Got to go for more tests. Actually...this all seems a bit scary. Does the soreness ease? Ibuprofen helps but it wears off. What's a fundus test and a fluorescein test? Anyone had these done?
—preciouseyes

just diagnosed

Sometimes just regular eye drops for dry eyes relieve the pain and redness temporarily. I also got a hair style the hides my right eye. I am learning to cope.
—Guest cindy

Shadow boxing without a shadow

I danced with episcleritis on and off for several years. For two years I have had flares of scleritis. Drops did nothing, Advil nothing, prednisone, ugh. Saw dr. Foster in Boston, the daddy of uveitis. I have nothing positive in testing for autoimmune. I have a rheumatologist who thinks steroids are the worst drug. I am on 8ml methotrexate. It causes chemo brain and roller coaster fatigue. When I have a flare my Opthalmologist starts me on 40 to 60mg Prednisone. This controls my life. It is like being a Ping pong ball. No one Dr. can treat all aspects of the problem. I have hopes that it is age related and a passing phase, ha, ha. Dr. Foster is the guru.
—Guest Gracie

Scleritis

Ii have had all same symptoms as everyone else on here my immunologist gave me prednisone 75mg every time I got down to 20mg eye would flare up so I had three treatment of chemotherapy all seemed to be good but since then I've had a few flare ups and have one now I'm still taking methotrexate 30mg once a week. I've been looking at taking out high inflamitory foods from my diet. I have read a lot and also note that my dad is an ex Vietnam vet and was sprayed with agent orange but no doctor in Australia will look at that as Bering a problem. I can be contacted on rannii1@hotmail.com if anyone has any ideas as to what we can do about this painful eye problem
—Guest Amy

scott

Hello every one who has or had scleritis. I was diagnosed with the disease after a month of seeing an opthomologist. He referred me to the Mass Eye and Ear infirmary in Boston and it was confirmed. Dr Raisman from the Mass eye and ear sent me to a rheumatologist. I had all the blood work done for the usual autoimmune diseases associated with scleritis. The results all came back negative except for an elevated ANA. I also was on 80 mgs of prednisone and tapered to 5 . It came back worse the second time where you could see the build up of white blood cells in the blue of my eye. Started prednisone at the same levels again and it went away for two days and came back. Started a third attempt with prednisone and the tapering and it went away.The whole episode lasted for 9 months so I can empathize with those that are dealing with it. It has been about 4 years since my last flare up. Some of the best doctors in the world are at the Mass Eye and Ear infirmary in.Boston. I would s
—Guest guest scott

ongoing Two years

i was diagnosed with scleritis abou two years ago i have had numerous flare ups some lasting almost two weeks at a time. I went to opthmalogist yesterday and for the first time was informed of the auto immune disease it's normally associated with needless to say IM worried I SEE the other specialist Dec 2 pray for me
—Guest lageta

ugly red thing

I too am a Scleritis hater, I have had it for about 9 months , I have tried fml, pred forte, cosopt, prednisone, and about 4 others that I cant remember the name to, I am also taking froben tablets and nothing is helping it, its a complete nightmare and it all started when I poked my eye with a spikey hairbrush, and my eye flares up nearly every 3 weeks, the sharp pain is the worse, and the dull pain stays for around 3 days, I am a 40 year young woman and its ruining my life, I've had no social life since, people keep reminding me that my eye is all red and looks painful,( I know I feel it and I can see it is), my knees swell up and they say its all related which I do believe, so they are now sending me to a rheumatoid arthritis clinic, but I wont hold my breath, good luck to everyone who has been diagnosed with the same horrible condition lets just hope that a miracle cure is found very soon.
—Guest bim

Posterior scliritis

I've been diagnosed with this since yesterday after 2 weeks with excruciating pain in my right eye and head. My eye doctor has prescribed me 80mg of steroids to take daily and said its cureable. Now reading these messages I'm starting to panic. Can you email me if anyone has been cured from this kerrie-miller@hotmail.co.uk
—Guest Kerrie

Scleritis meds

I was first diagnosed in 2004 at age 49, by an Ophthalmologist who prescribed Lodine, an NSAID. I had several flares over the next few years, then in 2007 every time I tried to come off the Lodine the pain, redness & blurry vision came back. I get a lot of eye watering in that eye also. My doctor said it had become chronic and I have taken the Lodine almost every day since. It stays under control but I worry about the long term effects of daily NSAID use. I don't want to try Prednisone. Maybe someday they will find a cure. After reading all the posts here, I want to say that any one with this disease needs to be seen by an Ophthalmologist.
—painedpam

Scleritis Flare Ups

I have had scleritis off and on for 3 yrs, I usually got it once a yr. However this last yr. I have had it since Jan 2013.I tested positive for lupis although don’t have symptoms. When I get flareup my nose hurets along with right side stuffed (pain always on right side eye). I started at 60 mg. and tapered off. Everytime I tapered to 10 mg it would flare up. I have been on methotrexate oral 25 mg and then injection, I just started imuran and so far nothing helps. I have been on that for 3 weeks. I again went down to 10 mgs and it flaired once again. I just went up to 20 mg and redness and pain is going away. However steroids has raised blood sugar and developed cateracts. Also have to take osteoporosis medicine bc steroids does wonders on bones. Off to specialist next week again. I am always tired and tired of the steroids.
—jj500

TREATMENT IS CONTINUE NO BENEFIT

I AM 36 SUFFERING FROM EPISCLERITISIN MY RIGHT EYE ONLY SINCE LAST 2MONTHS. I HAVE CHANGED THREE DOCTORS. NOW I AM GETTING TREATMENT FROM ICARE EYE CENTRE NOIDA SECTOR 26. AT THIS STAGE I CANT TELL ABOUT TREATMENT BUT I HOPE VERY GOOD DOCTORS ARE THERE THEY WILL SURE SUCCESSFULLY TREAT THE PROBLEM. IF ANY ONE WHO HAS SUCCESSFULLY TREATED THIS EYE DISEASE PLEASE SHARE WITH ME.
—Guest PREETI YADAV

When is going to stop?

One year ago I was told I had posterior scleritis and was given prednislone 60mg and was lowered every 2 weeks. But when it got to 12mg, the pain came again so my doctor raised it up again. Now I am being told that they have changed the mediction so now I am taking cyclosporine 100 mg. All I want to know is will I ever be off these medication? How soon? It's been over a year now.
—Guest maama

scleritis/auto immune

I have had scleritis for about 3 months. It was only that I went privately that I was diagnosed quickly and also with a rare auto immune problem. I was referred to a rheumatologist. I would urge anyone who has scleritis to see a rheumatologist. Do not be fobbed off with months of eye medication when that may only be the symptom. I am still on steroids - down from 80mg to 7.5mg and also on Mycophenolate which I had to fight for as they tried to give me Azathaprine which was cheaper and inferior.
—meggie.may

Scleritis

I was diagnosed with Scleritis in September last year (2012) and agree with previous members the pain is unbearable. I was given eye drops at first which did not help at all. I was then put on 40mg Prednisone gradually decreasing over the past 8 months and I am now on 2 mg per day. Since reducing the dosage the redness has come back in my eye but with very little pain. Specialist to-day has told me to up the dose again to 10 mg daily. My question is has the redness in my eye come back because of the dose reduction and if so is taking the Prednisone just masking an unknown problem. I haven`t been tested yet for any auto-immune problems. What is the Prednisone supposed to be doing? Why am I taking this if it is not a cure?
—ellierignall

Environmental?

I was recently diagnosed with this May 11, 2013. It started on St Patrick's weekend. First conjunctive meds. No results, then primary care doc, says its nothing. Then optometrist starts eye drops, 10 days later no real difference. Now steroid eye drops. Now the rest of the story. I am a teacher in a middle school. I use dry erase markers quite a bit and they leave a residue. Another teacher in my building has also been diagnosed with the SAME exact thing. Neither of us has been diagnosed with any autoimmune issues. Is it possible that the dry erase markers may be involved? or something in the building? It just seems too coincidental. Based on what I am reading here I feel I need to kick it up and try a Mass Eye and Ear doctor.
—Guest Chery

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Have You Ever Been Diagnosed With Scleritis?

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