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Recurrent Episcleritis. Hope. Possibly!!

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karen1515
karen1515

This is my third flare up since year 2013.   Was given loads of pain killer and round of steroid eye drops for months and yet problem not resolved.   

I went to see a opthamologist who sub specialty is inflammatory disease.  According to him, I am having a nodular type on my left eye only. My Intra ocular pressure is high at 22. He suggested to put me on oral steroid therapy for 4 weeks. Steroid eye drop and timolo to bring down the eye pressure.   My prednisone dosage schedule is 40 mg /wk, 30 mg/wk, 20mg/wk and 10mg/wk.  Now that i am in my 3rd week of prednisone.  My left eye inflammation improve immensely.  Never felt any better before.   Is no doubt prednisone though is effective to calm inflammation but it does not come without many side effects.  When I was on 40 mg prednisone, I felt nauseous, tremor, vomitting and

low energy.   I  was hungry all the time but unable to eat due to bloatedness.  As the dosage reduce the side effect is less.   

I was told his other patient having similar problem get cured after oral steroid therapy.  I hope so too because it is not pleasant to take prednisone.   And I want to get cure permanently!

 

0 likes, 4 replies

4 Replies

  • LindaAnn2
    LindaAnn2 karen1515

    Posted

    Well, I've had scleritis almost 30 years with at least one flare-up a month. I'm very sorry to tell you this because obviously there is no cure (for me) . I suppose if it's eppi, the injection could suppress it and/or cause remission.

    I've had several injections throughout the years and I refuse it now. Obviously anything (repeatedly) put in the eye isn't good long term. I also stopped the drops years ago, it almost seemed to make my inflammation worse. The ONLY thing that truly works for me is the oral steroids. If I can catch the flare-up very early with as little dosage of prednisone as possible, I can control it. They know I've taken it so long & I know how to wean off them on my own. I always have a large bottle of 20mg at all times. 😔

    I've been on every type of drugs/injections/infusions and unless they've discovered a new miraculous drug, prednisone is the only thing that works for me.

    In less severe flare-ups I used to take a couple extra strength naproxan (NSAIDS) every 4hrs- which did help but it began to seriously effect my liver so I had to stop completely.

    I wish you the very best of luck and hope they're able to put yours in remission!

    I hope you'll keep posting on your progress! I certainly welcome any known successful treatments they've made. Never give up!😊?

    • karen1515
      karen1515 LindaAnn2

      Posted

      Hi Linda

      Thanks for your feed back.   Aaahh....so sad no known successful treatments yet!

      Infact I have reservation when my opthalmologist said there is a permanent cure on eppi.  I have it for 5 years now.   Only this time I am asked to be on steroid therapy.   As much as I want it to be cleared completely, even  on  remission I have to live with it. Since you are on and off steroid for a some time.  Do you experience any side effect from it.  Like moonface, gaining weight and all.

      Wish you well.   Let us keep update on eppi and hope one day there found a cure.

       

       

  • LindaAnn2
    LindaAnn2 karen1515

    Posted

    Hi Karen, unfortunately yes, I've had all the horrible side effects. At one time I was taking 80 to 100mg pred x day. I looked like a chipmunk stuffed full. I suppose the worst is the insomnia, sweating & weight gain. Along with menopause, it wasn't pleasant. I was always very thin and I'm now 40-50 lbs over my normal weight. Being overweight and hot, in Florida isn't a good combo. Trying to lose weight is difficult.

    I know I sound depressing, but keep in mind I have scleritis and rheumatoid arthritis. They say eppi is not as serious. So I hope yours doesn't turn into full blown scleritis! And no other deseases associated with it. I'd get bloodwork to rull out other deseases. Although sometimes it doesn't show its ugly face until later, and sometimes doesn't show in bloodwork. If you can get ahead of it early on is good. Can prevent lots of damage esp in the joints. But that's the worse case scenario. So you're doing ok now in comparison to the more serious forms. It also depends a lot on how bad your pain is?

    I hope to keep in touch and hear nothing but future good news from you! I know I sound like a downer, but please don't let that scare you. I was an optician for many years, sold thousands of eyeglasses and I've only met ONE woman who had scleritis as bad as mine. I know there's many case studies of it, but most are much more benign.

    Oh, and I went to quite a few doctors before I got the correct diagnosis from Bascom Palmer Institute. I was so bad that the first thing they did (30 years ago) was the injections in both eyes. So I highly recommend 2 or more doctor opinions and only the best!

    Healthy and happy wishes to you and best of luck!! 😊

    • karen1515
      karen1515 LindaAnn2

      Posted

      Hi linda

      Your message is very informative. Thanks for sharing.

      Since year 2013 until now i have had 3 flare up. Every each time I was asked to do systemic blood test, chest x ray and Mantoux test. This is to rule out rheumatoid arthritis, lupus, sle, etc. Each time results are negative. This time i was asked to do sarcoidosis and anca test. Like you this is my fifth ophthalmologist sub specialty in inflammatory diseases. Hope he can help my epi.

      It always my left eye that is effected. It is epi. Nodular type and sectoral. No it does not progress to scleritis. Mine have no pain. Mild discomfort, watery, redness, and photophobia. Good thing is i am not associated with others disease.

      I am in the fifth decade of life and post menopausal. I am on 20mg prednisone now. I feel less of the side effect. I watch my diet. Yes, I exercise a lot. At least 3.5 hrs cardio, hit, abs and strength training mix per day.

      I am from Kuala Lumpur. Sunny all year round. I am schedule to follow up vis it for eye check next Monday. Will keep you posted the progress.

      Hope all are well with you. Stay healthy!

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