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Readers Respond: Have You Ever Been Diagnosed With Scleritis?

Responses: 33

By

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.

my struggles

I am 16 going on 17 and I've had scleritis for ..I don't even know, I've had red bloodshot eyes since 5th grade but the pain didn't start until freshman year highschool. Nothing worked until i took prednisone 60 mg and all the lovely (sarcasm) side effects that came with it. I was recommended to a rheumatologist and she didn't know what was wrong since I had no other symptoms, until my lungs started hurting so bad I couldn't sleep and she diagnosed me with lupus. I take 10 mg of methotrexate every week, hydroxychloroquine every day, along with 5 mg of prednisone and Im sufferingwith horrible pain inmy left eye. I recently got prednisolone eyedrops that help very slightly but I'm still in pain. I've had constant scleritis pain for almost 4 years I would love to hear from anyone with lupus and scleritis that hasn't had a flareup in a while.
—Guest stephanie

PAIN

THE EXTREME PAIN. I CANT TAKE IT ANYMORE. ITS ONLY IN MY RIGHT EYE BUT HAD BEEN FOR OVER A YEAR AND I CANT TAKE IT ANYMORE, I NEED HELP. NONE OG THE DOCTORS KNOW, NONE OF THE MEDS HELP. LET ME KNOW IF ANYTHING AT ALL HELPS. I NEED IT, THE PAIN IS UNBEARABLE.
—Guest PAIN

jessie hancock (mom)

my son was diagnosed with scleromalaci about a year ago.finally.was treated by v.a. they sent him to st.louis v.a. they have told us it can not be curedbut they could get him in remission.he has a serious problem with right eye. problem was he had been on predisone for about a year and that had done some damage. the gole was to get him off of predisone. was in the hospital for treatment.was given rituxan (intravenous iv)over a six hour period. there is no pill form of rituxan.this is a cancer drug.it worked for him.he is in remission.
—Guest jessie hancock(mom()

Scleritis

I was in severe pain for 5 weeks before being diagnosd with Scleritis. The hospital told me on 5 seperate occasions that I had viral conjunctivites and did not give me any treatment. I'm not taking flubriprofen and predisolne, along with eyedrops. I'm happy as the pain is undercontrol and the swelling has gone in my left eye, however my vision is still blurred and gets worse depending on light getting into my eye. I have now had scleritis for 8 weeks and 3 days and my left eyes still red, although not as much as it was. This is the worst pain I've ever felt and wouldn't wish it on anybody. Will my eye go back white? Is there anything I can do to prevent getting this again in the future? I've been off work for 2 months already, as I work on computers most of the day and am desperate to get back to normality but do not want to damage my eye anymore until it is back to normal.
—Guest sophis richardson

Posterior Scleritis

Worst condition ever. I have no underlying condition. I have been on Prednisone for 15 months, and am also on Methotrexate injections and Remicade infusions...they have been my saving grace. I see the best ocular immunologist in the world (literally) - Dr C. Stephen Foster in Cambridge, MA. He has saved my eyesight. The last year and a half has been hell, but if I didnt live 30 miles from Dr Foster's clinic, I have no doubt I would be blind in my right eye.
—Guest Melissa S.

Scleritis for a decade

As I was reading, it makes me so sad to know that scleritis has no cure. The worst flare-up of my life was 12/11. I have been on prednisone since, 80mg-0. Just yesterday (05-10-12) I had another flare-up, so more prednisone plus methotrexate. The side effects of the prednisone are horrible. I gained 20 lbs since December, chest pain, knee proplems, esophagus problems, gastritis. But the doctors say I am perfectly fine. I have been off work and I don't what to do anymore. I hope someone finds a cure for this miserable pain.
—Guest Maria Gentile

Maintaining scleritis with medication

I am 32 and have had scleritis in both eyes with flare-ups for the past 4 years. It took about 2 years to figure out the right medication to keep it at bay, but this is what has worked for me: 100 mg of Azathioprine daily. I have had absolutely no side effects with this medication, although I do go to the lab for blood work every 6 weeks. When I do have a flare up, Durezol works faster than any of the other steroid drops I have tried. Although my eye pressure goes up on Durezol, it doesn't raise enough to make the medication a problem. Scleritis is SUPER ANNOYING and my heart goes out to everybody posting on here.
—Guest Sarah

One year

I was diagnosed one year ago. It's back again now, in the other eye. Remember, although it hurts like hell, it won't last forever! I use an ice pack, especially before bed, and take ibuprofen to help with pain (no drops really worked for me).
—Guest KK

Posterior scleritis - first time

Mine started with vitreous flashes, bilateral eye pain and vision loss in Nov. 2011, immediately following a minor surgery. I was diagnosed within one month (confirming ultrasound), which I understand is fairly fast. I had warped retinas, edemas, constant pain (mild to severe), one retinal tear, and purple and puffy areas under both eyes. All testing for underlying systemic disease has been negative, including TB, MRI, HLA B27, HLAB51, Lupus, ANA, everything you can think of. I believe (or prefer to hope) that it is an allergic reaction to the general anesthesia used during the surgery. I was started on 60mg prednisone in Dec. 2011, now (Feb. 2012) down to 30mg prednisone, but have had “break throughs.” I just started on methotrexate on top of the prednisone. This is not how I envisioned spending my 55th year. The prednisone makes me manic, which is good for the kitchen, but not for relationships at home and work.
—Guest gail 55

Ankylosing Spondylitis - Scleritis

Same story as many others. Had many joint complaints including lower back that went misdiagnosed for decades. Then when I turned 51, scleritis set in left eye. Oral prednisone worked temporarily. Humira worked better, but took Remicade + injected MTX to completely control. Now I just have joint damage pain and morning stiffness... along with low vision and head pain. Depression too. Gee, I'm a real prize.
—Guest Brian

Little confused

Hi. Frst I got scleritis back in July in my left eye. It seems to be under control with Froben and steroid eye drops, but suffer now with blurred vision. The question is does anybody know if the blurred vision clears or is that it? Does it get more blurred with each flare up?
—Guest Chris

Scleritis

I was diagnosed with scleritis about two years ago. I was put on Imuran and it seemed to help, but I got extremely sick and had to go to the E.R. My liver or gallbladder was being damaged by the medicine (that is what the doctor thought.) So I immediatly stopped taking the Imuran. My scleritis had gone into remission for over one and a half years...until last night. I hardly slept a wink overnight due to the overwhelming pain. I dont know what to do now.
—Guest Paul

Lucky case

I was diagnosed with scleritis when I was 14 years old, and judging by others stories, I was one of the lucky ones. It took doctors and specialists about two weeks to diagnose it and find an appropriate treatment, and they were the worst weeks of my life. At first, I thought I just had an irritated eye.But then I woke up one day with a swollen eye, and pain along my brow line that was intense, like I was repeatedly being smashed in the head with a hammer. But then the doctors figured out what it was, prescribed a heck-load of anti-inflamatories and eye drops. A few weeks later, and the pain, swelling and infection was gone. I too was told it never really goes away. Like asthma. It's always there, and I may, from time to time, have an "attack". I did the following year, about the same time, but they got onto it much quicker so I was better in a matter days. I am still a bit senstitive to bright lights, and have to be careful to keep my immune system up to avoid another attack
—Guest Susie

There is hope

I was recently diagnosed with scleritis,I have had probems with my eye before,the pain when trying to look at something was sooo very painful,I've taken oral steroids to no avail, But the Dr.gave me a new drug calledDUREZOL, I thank GOD for. This med, in three days I felt like a new person with a brand new eye. It really worked.
—Guest Ginger williamson

Scleritis

I have had Scleritis for 5 yrs now, actually I have it right now in my right eye..I'm taking 60mg of predisone each day to get rid of it,its helping but takes some time for it to heal. I never in my life thought your eye could have pain like what Scleritis causes on a scale of 1-10 it was for sure a 10 !! had the worst eye stain you can imagine when looking at thing up close..it feels like you got soap in your eye and someone is poking the eye with a needle and like you got socked in the eye as all the mucles around the eye gets involved... Thanks for reading... Gail
—Guest Gail

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