is episcleritis not curable????

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I have read a load of other peoples experiences and it has made me very depressed. Is there no cure for episcleritis? Does no one ever get better? I have suffered with it since october last year and every time I get a new lot of drops I think \"YES!! this time!!!\" but all the letters on the forum seem to tell me is that this problem can't be cured - come on, SOMEONE must have some good news!! PLEASE! If I thought the rest of my life was going to be a trawel from doctor to doctor with these agonising headaches and red eyes all the time I think I'd go mad!!

Please, tell me what works. How am I to cope? there must be a cure out there! Come on people we can get to the moon, why can't we cure an inflamed eye? Do we have a commen cause or what?

Help!! Anyone!

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  • Posted

    I think its about going into remission not being cured. But remission is good enough. You will have to find your right cocktail of meds/eye drops. This is a lifelong illness that you will have to live with. But it does not define us. I am still trying to find my right cocktail. I hope you have found yours? 

    Smiles an hang in there. Send an update on how you are doing if you can.

     

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  • Posted

    Hi music maker,

    One year and two months ago, I went to get contacts. Within a month, my eyes were beet red and I was in the pain we all know too well. Six months later, my diagnoses was anterior and posterior scleritis. Like all of us, it has been a long journey. I finally found an eye specialist in my area who could properly diagnose me. He believes it is scleritis rooted in RA and that is the kicker. Scleritis is thought to be rooted in rheumatoid arthrits which is auto-immune and auto-immune diseases are simply treated with drugs. What he then did was form a team. He found a retinal specialist for me at Duke University and made an appointment with a rheumatologist who could prescribe and monitor the endless drugs they try out on us Guinea pigs.

    I am on humira and methotrexate, tapering off prednisone (the devil drug); last Friday I decided my quality of life was of no quality and I did not give myself the Humira shot.

    Saturday I woke up and I was a new person. It was astonishing and very unexpected. I had no head pain and no swelling in my feet. By Sunday, I slept through the night without the exhaustion of dry mouth. I have reduced my prednisone to 2.5 every other day. By Monday, I felt no need to take the Advil first thing in the morning. For eight months, I have not been able to begin my day without a cocktail of prednisone and 800mg of Advil.

    I asked my doctor if she would consider me going off the Humira until my next bloodwork tells the tale of my inflammation. She believes this is simply a fluke and that the Humira finally kicked in. She believes that if I stop taking the Humira, my scleirtis will get worse.

    For now, I am going to wait and see how I feel. Neither of my choices are good if indeed she is correct. Go blind or live a life that is not worth living on Humira.

    My advice to everyone is to think outside the box. You know your body better than anyone else. Think about any possible cause and try things.

    1. My Doctor at Duke said I had very dry eyes and that could be the cause of the transient pain (he said the pain from inflamation that is associated with scleritis is constant.) I purchased over the counter eye drops for dry eye, without preservative, and put them in my eye every two hours. Sometimes I forget so I found, on Amazon, a mask that heats up and is for dry eye. I do this morning and night for 30 minutes. I know it feels amazing and I think it is helping. I have been doing this for two weeks.

    2. I have been going to an Acupuncturist for about 2 months.  My regular person is on vacation so I was with the person who started the clinic yesterday. She told me that eye is a reflection of what is happening in the liver and the liver is where we store anger that is not released. I thought this very interesting. So get mad and release it :-)

    She gave me chinese herbs to "get the fire out" of my eyes.

     

    3. 2 weeks ago, I began oil pulling which is a process of swishing coconut oil in your mouths to rid any hidden bacteria or infection that may be present. Google ‘oil pulling.’ I hate doing it, but in the light of the alternative of scleritis, I will do it.

    If I had to do it over again, I would try adding one thing at a time so I would know what indeed is working. However, like all of us, I was desperate for relief.

    I am not going to accept it as a forever thing, I hope neither do you!

    Wishing you wonders :-) 

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  • Posted

    Hi Music Maker,

    There is no cure but there is hope of remission. I have not yet gone into remission but I have improved. I am currently on Methotrexate .6 injections and weekly Humira injections. Humira has showed the most improvement for me. My pain is completely gone and the redness has gone down. I too am hoping to find someone ANYONE that has gone into remission. Keep us updated on how you are doing!

    Smiles

    Shauna  

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  • Posted

    Hello,I've just been diagnosed with scleritis,I've been using two types of eye drops,one which is a steroid and the other is a acular,they took the redness nearly away,and the pain has gone,this is over 3 weeks,but this morning the redness is coming back,and I'm terrified of it because of the pain that comes with it,before the eye drops I was taking two Paracetemol every 2 half hours,which is no good,as I have had a kidney transplant,can you give me any advice

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    • Posted

      Hi Dazyat,

      Goodness your case is certainly complicated by your liver transplant. Everyone seems to react differently to the different drugs. Early on my road with scleritis they gave me predlisone (which is a steroid drop); because the steroid brings the pressure up in your eyes, they gave me comagan to control that. Scleritis needs more powerful drugs to clear because it is my understanding that it occurs due to an underlying autoimmune disease. I had to take oral prednisone to control the pain until I could get into a rheumatologist. I faced lots and lots of tests and had to have patience and after a year and a half, I am beginning to find relief. I would highly recommend feeding your soul as you venture down this road. I recently found Oprah's SuperSoul Converstations and listen to them. I wish you well!

      pamela elle

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