Struggling with posterior scleritis

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Hi, my name is Lucy. I'm 31 and I got diagnosed with posterior scleritis on the 1st of March 2013, I was 26. My life has changed a lot since then. I struggle to cope with the pain, I've not managed to go 3 months without a bad flare up. I have taken prednisolone steroid for prolonged amounts of time and I hate them. They make my anxiety and depression worse and my mood swings hard to cope with. My joints swell, my face swells. It makes very self conscious. I am now on methotrexate injections but still have flare ups. I have 2 young children who I raise alone with the help of my mum. I have been signed off sick but received a letter today saying that don't think my illness is severe enough to help me. There is a lot of other things going on at the moment and I've never felt more alone. I've never meet anyone else who suffers with posterior scleritis, I was wondering if anyone had any advice on how to deal with this disease?

Any advice would be much appreciated.. Thank you.

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  • Posted

    I really feel for you Cornishmaid but prednisolone I have found is the best way of keeping it at bay. I too hate the damn things but they are the only medication that helps to keep the flare-ups from happening. I have been on them constantly since October 2015 in various doses, trying to reduce them at the moment by 1mg every 10 days (I have tried all sorts of combination ways to reduce) presently on 12mg as of today. Have tried going down faster but it just doesn't work and always end up back on a higher does than previous, fingers crossed I will get down this time, even if I have to stay on something like 5mg it is still better than flare-ups and better that a higher dose.

    Hope you manage to get stabalised. There is a vasculitis UK support group on facebook (Scleritis comes under the vasculitis auto immune heading) but I find that those members are suffering from far worse than scleritis (yes there are worse things) and really frightened me when I first joined. Have you seen a rheumatologist? Last time I went to the ophthalmology clinic they decided to refer me back to Manchester Eye Hospital as they are at a loss how to treat me.

    Best wishes :-) 

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    • Posted

      Thank you for replying.

      I struggle on Prednisolone steroid, they make me very unwell and my mood swings get really bad. It effects my depression and anxiety really badly to, to the point I struggle to leave the house and have felt suicidal. Which is a side effect to taking them. I have two young children to consider and they deserve a better mum then I can be emotionally on them. I take them, on a lower dose now but it hasn't help prevent flare ups.

      I have been to Bristol eye hospital on Thursday and go back in 6 weeks to discuss other medication as methotrexate isn't helping me much either.. I think a lot of it is trail and error when it comes to medication, it's just hoping to find the right one that works for you.. Also noticed that stress seems to trigger flare ups.

      I'll look into the facebook page. I understand there are plenty of worse things to suffer with, and its awful what illnesses can do 😞 unfortunately that doesn't help make any of us feel better when it feels like your eye is going to explode out your face 😞

      I'm hoping it all starts to settle down soon, for all of us.

      Thank you for taking the time to reply. I'm ever so grateful.

      Best wishes x

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    • Posted

      Just been reading the other replies and I have never heard of Humira before, it seems to be working for some, so I think I will enquire about it when I go to Manchester, maybe you should ask about it?

      At the beginning (well actually 12 months after the start as it took that long to get a diagnosis) I had cyclophosphamide infusions coupled with Prednisolone boosts which helped to take control of the steroid dose, but I am 2 stone heavier than at the start :-( 

      I hope you get some answers and solutions when you go back to the Eye hospital xx   

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  • Posted

    Hi Cornishma,

    I started weekly injections of Humira along with weekly injection of Methotrexate. The pain is nearly/gone. I do not take steroids anymore as they were really rough to take. I am also on steroid eye drops that are really helping. My life has also drastically changed and I find it tough to deal with. But I also have 3 children I am 35 so we don't get the option to give up. Try talking to your doctors about new medication options. There are other things you can take. I have to work 40+ hours a week to support my family and some days I am so tired I feel like I cant do it. So I really understand what you are going throe. Hang in there and if nothing else I am hear to listen.

    Smiles and best of luck to you!!

    Shauna

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    • Posted

      Thank you for taking the time to reply to me.

      I've never heard of Humira.. I'll have to look into it.. I don't handle Prednisolone steroid very well, it increases my depression and anxiety to the point I find it hard to leave my house and I have felt suicidal, all can be side effects of steroids.. I'm on a very low dose now. Long term use of them aren't great for you either.. Guess they can work better for some then others.

      I have Bristol eye hospital in 6 weeks time to discuss medication as methotrexate doesn't seem to be working at the moment.

      It just feels like there is no end in sight at the moment and to be honest I'm scared of what our future holds. I can't cope with the frequencies of my flare ups or the impact it has on not just my life but my childrens.

      I have the up most respect for you, you are one strong mumma and to work so hard to keep your family going on top of having to deal with such a painful eye disease, you're an absolute inspiration.

      I hope your medications start working for you and life only gets better for you and your family.

      Thank you for your support. Always here for you to if you ever want to chat.

      Best wishes, always x

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  • Posted

    Hi Cornishma,

    So I also felt awful on the steroids. Humira has been a life changing drug for me. But it works better while taking it with Methotrexate. You can take Bi weekly to Weekly shots. Also have you talked to your doctor about taking an Anti Depressant medication? I too started feeling very depressed and the fact that this illness/other medications are making you feel suicidal is really awful. There are other medication out there to counter act that until you get your eye disease under control.  I think we all get that there are worse things in life. But S**t is s**t and right now what we have is a form of s**t. So either way you put it it sucks. But that doesn't mean there is not a positive outcome. There are other medications out there that don't have to be steroids. There is also Remicade infusions. I may actually start those in about 2 weeks. We will see. So press your doctors about getting you off the steroids and onto something you can tolerate better. Hang in there!!! It really is hard. I understand.

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  • Posted

    Goodness Lucy, I am so sorry!

    I too, have struggled with scleritis; have taken prednisone, methotrexate coupled with weekly injections of humira and now remicade infusions.

    I HATED prednisone and for the first year, my pain was unbearable. My ophthamologist was insistent on me getting off of prednisone because of the side effects you speak of and the bone loss that occurs. Unfortunately, it took time for me to get into see the RA doctor to get the drugs to replace prednisone. At one point, I would have rather died than endured the pain. Finally, I went to my primary care doctor because my retinal specialist listened to my plea of pain and told me scleritis pain is constant, it doesn't come and go. My primary care doctor looked up my nose and told me I was completely full of congestion. She gave me decongestant and told me to get flonase spray. I no longer have to take 3200 mg of advil along with prednisone and company and am pain free. Crazy, right!

    It takes time to find the right cocktail that will clear the scleritis. Your body attacking itself is hard to cope with but try to find other outlets to help you through it. I found a place that is affordable and have begun weekly accupucture. I joined the YWCA and have started exercising. I listen to podcasts like Oprah Winfrey's Super Soul Sundays--they are great!

    It is hard, I know. I haven't found the right cocktail myself and I have had thickening to the back of my eye that is now irriversible. I try to concentrate on anything positive in my life, cut down on sugar of course, and hope and pray it disappears. In the mean time I also practice patience.

    I wish you all the very best and hope you get relief soon!

    Pamela Elle

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  • Posted

    Hi i am 28 year old male from india i have all the symptoms of posterior schleretis schlera getting thinner but doctors here are not been able to diagnose it and for me this has happened because of me i used to watch tv alot playing ps and psp games without taking any break anything in extreme excess is harmfull which i did never thought of this will happen.now also i am typing this msg in extreme low brightness i have photosensitivity can you please show me the test how you diagnose..
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