Chronic bilateral scleritis

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Hi

I am being treated for chronic scleritis in both eyes. I was hospitalized for a week over Christmas and was put on a high dose of prednisone.

I was then on methotrexate which didn't help much and today I was prescribed Azathioprine, I hope I get some relief with this as I have been in unbearable pain for almost 8 months. I am living on endone right now.

I had a heap of tests when I was in hospital and the only thing they found is I am HLA-B27 positive which means i am predisposed to getting auto immune diseases.

I also have keratoconus which means i have no choice but to wear contact lenses, this doesn't help the pain in my eyes, they feel like they have broken glass in them but i have to wear them or i am legally blind. I have to wear them to be able to live a normal life.

Would love to chat to anyone else battling scleritis, I kind of feel very alone with it being so uncommon.

Thanks for reading

Dawn

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  • Posted

    Hi Dawn. I'm a scleritis sufferer too. It started with corneal ulcers 5 years ago and then I was hit with my 1st scleritis flare in december 2013 in my right eye. It was anterior diffuse. In Feb this year I had another bout in my left eye, followed by another attack in my right eye just over a month ago. 

     I find I'm spending quite a bit of time researching scleritis and what it might mean for me in the future. The only problem is I'm finding no good news stories, but I guess they don't feel the need to discuss it when it's going well.

    I have found a lovely support group on facebook, there are only 2 so easy to find wink 

    I've just finished a 5 week course of prednsilone, but am still getting nasty headaches and pain around my eye socket, so I think there might be some residual inflammation this time.

    I had the same genetic test done, but mine was negative, however I do have a lot of the Ankylosing spondylitis symptoms, so the rheumatologists/opthamologists are keeping an eye on me. I have a lot of other health problems and it's hard to try and juggle all the info and symptoms and try and work out what is doing what. It's a nightmare lol.

    Have your symptoms settled at all in the 8 month period? Did the steroids reduce the inflammation initially? I think I'm pretty lucky that they have worked well for me so far.

    The consultant I saw said the next time I have a bout they will be putting me on an autoimmune drug like Methotrexate, to see if they can prevent it from reoccurring. Fingers crossed I won't need it

    Best of luck to you Dawn, feel free to PM me if you want to chat

    Sarah

     

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    • Posted

      Hi Sarah, great to hear from you, not great that you have scleritis though!

      Been to the eye doctor today, had an Avastin injection into the left eye as I have blood vessels growing into the cornea. I don't have much vision left in the eye because of that so they are trying to stop the blood vessels growing further. It's like looking through a fog.

      I'm just really over it, I have a great team looking after me but to be honest I haven't had much relief from it over the last 8 months, it's been pretty much constant. The fact that I have to wear contact lenses doesn't help but I have no other choice.

      Currently I am on Prednisone, Azathioprine, and Predforte drops. Weight gain from being on pred for 8 months not good. I am hoping the new immunosuppressant will work and give me some relief. The eye doc today said my right eye still looks angry but I have only been on it 3 days.

      Sorry that you are going through this, Scleritis sucks!

      Dawn

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  • Posted

    Hi!

    I'm am from Finland and this is the first time I found someone else suffering from episcleritis and scleritis.

    Yes, I have them both. Have had for 15 years. When growing up I had these enormous pains with blood shot eyes but no doctor would treat it. The first time I was admitted to the Eye Center of Helsinki i was 20. They wanted me to try Prednisolon for couple of months, when it didn't work they sent me away. They said only that maybe I was mentally ill and stressed. Obviously I was angry and shocked because I am perfectly fine in my head, my only problem is my eyes.

    Then scleritis attacked my both eyes, first left and then right. It hurted so bad that I couldn't go to school, watch tv or anything else. I stayed up for three nights before I went to the ER. They sent me to the Eye Center.

    I was put on 70mg of Prednisolon, Pred Forte drops, Acular Allergan drops and 2300mg daily dose of painkillers. Prednisolon gave me chills, hallusinations and all kinds of side effects but I kept eating it. Cleritis was cured and the head doctor at EC (Who took me as his patient because no one has seen case like this) suggested I must continue the steroids. I continued and fight against side effects, bruises, dyspepsia, mood changes...Medication seemed to work and now after a year I tried finally drop the dose in 5mg (The amount of Prednisolon has been modified lower many times) but now within a week my boh eyes flared back bright red. And now the dosage of Prednisolon is again 30mg.

    The worrying part is that my eye pressure has gone up over 30 wich is waaaaaay too high. So if anyone has any information about successful treatment without corticosteroids involved please let me know. I have been tested for any rheumatic diseases and all of the tests were negative.

    I would like to be a normal guy with normal things to do but the truth is this condition has and will ruin my life if it continues. I think the next step will be trying metothrexate but I'm really not into that kind of poisons, especially when I don't have any other symptomps of any rheumatic disease.

    Keep on fighting!

    Luca

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  • Posted

    Hi dawn , I have necrotising scleritis in both eyes for 8 years. I have been on metherdrexate oral and injection, azathioprine , steroid injections, influximub, ciclosprine , cyclopsmite . None have worked. I have a attack every other week , some lasting 5-6 days. I have replied to you because I feel just like you very alone. It is a terrible disease if they can't control it . I am currently off all medication till next week when I go the hospital . My doctors have told me that I have the disease which just doesn't respond to any treatment . I'm thinking about having acupuncture as a last resort.im hear if you need to talk. Hayley
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