Struggling with posterior scleritis

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 :-) 

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

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.

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

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..