Juvenile idiopathic arthritis and severe scleritis

Kirk Member Posts: 4
edited 28. Nov 2023, 14:04 in Living with arthritis
Hi, I was diagnosed with reactive arthritis when I was 16 years old. My whole body locked from the jaw down and it was one of the most painful things I have ever experienced. Now my problems are severe scleritis which keeps going to the back of my eye as posterior scleritis, I lost my vision during A levels in my left eye and it’s extremely painful (Thankfully it came back). I’ve been on steroids for two years and had multiple infusions. Humira and methotrexate don’t manage my scleritis, I’m now being prescribed tocilizunab. I’m scared it won’t work as I’m a rare case and I don’t want to feel so alone cause honestly it’s depressing and frustrating.


  • [Deleted User]
    [Deleted User] Posts: 3,635
    edited 30. Nov -1, 00:00
    Hi Kirk
    Welcome to the forums, you are going through a lot at the moment with your diagnosis and pain attached to it. You have come to the right place for talking to others and chatting over the things you are going through at the moment. Just choose a forum or forums the most popular forums are Living with Arthritis and Chit Chat.
    Hope all goes well and all the best Christine
  • stickywicket
    stickywicket Member Posts: 27,719
    edited 30. Nov -1, 00:00
    Hi Kirk and welcome from me too.

    That's a lot to go through. I started with RA at 15 but I've been thankfully clear of any complications. (I presume the scleritis is a complication.) I flared badly at A-level time. Stress does make arthritis worse.

    I've never done the biologics but I hope the tocilizumab works for you. With all our meds it's just the case that some work for some and others for others. Trial and error. I hope this is the one for you.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Hello, I am sorry to read your story and cannot help as my experience of arthritis has been so different. I was born with auto-immune issues so the arrival of psoriatic arthritis was not a surprise - I began back in 1997 when I was 37. It wasn't accurately diagnosed until nine yesrs later which changed nothing then osteoarthritis was diagnosed in 2011 (that did come as a shock).

    For the PsA I inject meth and humira, they control disease acitivity but nothing more, to be honest I never expected more than that to avoid disappointment. I have not had scleritis - has that been caused by the arthritis or the meds? I apologise for my ignorance. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben