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Scleritis

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Guest
Guest

Hi, I'm 23 years old female. I was diagnosed with scleritis in 2005, i woke up one morning with an unbareable pain at the back of my right eye, and it was all red. Any way i have been under the hospital for 4 years always back and fourth. I have various types of treatments (Steroids oral and aziathropine and more) The only thing that kind of helped patch it over, was a steroid injection in the cheek and eye lid. In a result over the course of time, i had over 10 injections and put on 4 stone from being on steroids. I then had to have an operation to remove the fat which had stored from these injections. I have reoccuring attacks which can ladt weeks at a time My eye is never white, I have also lost most of my sight in my right eye. I have never had problems with my left eye, up untill Dec 2008. What makes it soo much harder is its now in both eye's and when its up it's so painfull, I am really struggling i can't leave the house and my job is getting harder and harder to maintain now. I feel their is not enough awarness for patient's any type of scleritis. I know when some makes a comment on my eye's or ask what it is. When you tell them they have no idea.

0 likes, 8 replies

8 Replies

  • sabet
    sabet

    Posted

    I have just read your message and I really feel for you. I am 61 and have had scleritus for 8 months and so far have not suffered too much, but am increasingly worried about the long term future for my eyes. so far I have been told nothing have had one blood test - clear and now am waiting for results of another. I have no history of arthritus or heart problems so why have I got this awful, at the moment, invisible problem. Only invisible because at the moment the steroid drops and the ipfroben tablets three times a day seem to keep the redness away. Hope you read this and know there are others out here who can emphazise to a certain extent. Sabet Suffolk
    • shauna65365
      shauna65365 sabet

      Posted

      Hi Sabet,

      Thank you for posting!! Very encouraging that the medication you are taking is actually working. I too have had so many blood tests and like you is a mystery as to why I have this illness. That is a very frusterating thing. But it sounds like you have found what works for you. I am hoping to also get there too. Knowing you are doing well gives me strenght. Keep me posted on how you are doing!!

    • abbie_20562
      abbie_20562 shauna65365

      Posted

      I am not actively taken any medication now, I just had two infusions (bit like having chemo) and within a few weeks I was pain free and my eye had completely settled down. It took longer to come off the steroids and other medicines as this had to be done in stages. But six years on no medication whatsoever for my eye
  • KR
    KR

    Posted

    CRY please read my latest post !! ( A reply to COOKIE MONSTER ) . Your experience joins some of the most sad I have read.! HERE TO HELP . KR
  • Guest
    Guest

    Posted

    Hello Im from Argentina. I have \"scleritis\" it started in late Oct 2008. I have been under treatment since then. I have Rheumatoide Arthritis and that is the cause of my scleritis.

    I have been prescribed, PREDNEFRIN FORTE, CLICLOSPORINE, GLAUCOTENSIL DT (all of them drops) and I have also taken Deltisone (corticoids, which made me get FAT!, now Im just under 4mlg)

    The last thing they tried was..AZATHRIOPINE 50mlg daily but in 25 days they noticed it affected my liver badly so they removed it. On 5th Feb 2010 I will see my rheumaotlogist and we will see what he says. Im passing my experience coz maybe it could be useful for you. Good luck

    Im still getting my eyes red but thanks GOD there is no pain.

  • Mjd11
    Mjd11 Guest

    Posted

    I completely emphatize with all of you. I too have been suffering for 2 yrs. now. First diagnosed with dry eyes, then iritis, then finally scleritis. Been using Durezol eyedrops for more than a year now. At first it worked fine, but gradually the redness came back with pressure pains. Opthalmologist referred me to an eye specialist,who increased my dosage of Durezol,but redness still persisted, I was referred to an RA. A lot of bloodworks which are all normal. Rx Prednisone,metjotrexate,folic acid,meloxicam, for eyedrops still on Durezol, Prolenza and Combigan. With all these, still having eye issues daily specially in the morning. Seems need to increase dosage of steroids again. But starting to feel the bad side effects of all meds. Having blurry vision with left eye now, weight gain, cramps, losing hair,hot flushes etc all fr the steroids. Eye specialist just told me, they have not found treatment but just controlling the scleritis symptoms, which made me feel so low. Now I deal with it on a day-to-day basis. Have not given up praying, God is the ultimate healer!!! Blessings to all. 
  • shauna65365
    shauna65365 Guest

    Posted

    I am so sorry you have suffered so much. At such a young age. Have they tested you for underlying auto amune deseases? I was just diagnosed with Sclaritis that is caused by an auto amune desease. Unfortunently they dont know what one it is. But I am taking Methotrexate with eye drops and steroid pills. I am still not in remission but the pain is manageable and the redness is less enough where people dont make comments to me anymore. Do you have a rhematologist? If not you may want to get one. They are the ones that can perscribe the medication that helps.  I may also start taking Humera. I was told taking that with methotrexate will put the sclaritis in remission. 
  • abbie_20562
    abbie_20562 Guest

    Posted

    Ask your doctors about Retuximab - see my othe posts - I have been pain free for 6 years.
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