Necrotizing scleritis

[PSAWarrior28]

I'm struggling with ongoing eye issues. I had uveitis in my right eye which seems to be clearing up. However, I've started having intense pain in the same eye. This was diagnosed as necrotizing scleritis by my ophthalmologist consultant. Was given more steroid eye drops and prednisolone increased. Has anyone had this condition? What was the treatment plan? I'm also on hymiroz (fortnightly on 3rd injections) methotrexate 25mg weekly and hydroxcloriquine 400mg daily. I'm having to take ibuprofen to get relief from intense pain. Very worried about losing vision in that eye.

[oldtimer]

That must be terrifying for you. I do hope that you are having support from your medical team - both for the pain and for the mental anguish. Best wishes!

[Fruitandnutcase]

Sorry can’t help but I’m sending you sympathy and good wishes because it must be very upsetting. On the plus side you are being seen by a consultant ophthalmologist so you are in good hands. x

[springcross]

I'm really sorry to hear that PSA Warrior, it must be so unpleasant for you. I really hope they can get this sorted. All the best. xx

[Kags1068]

Hi PSA

I'm really sorry to hear this. I've had severe ongoing eye issues for many years and do appreciate how painful and scary it can be. I've had bouts of Scleritis too, but not Uveitis. I'm not sure if mine is necrotizing or non-necrotizing as it's never been specified to me. My problems have mainly been in my right eye too, but have had Scleritis once in the left eye as well. Most of my other eye issues have been corneal related with the extreme dryness leading to inflammation, ulcers, corneal/rheumatoid "melt" and ultimately repeated perforation. The only treatment is corneal transplants. I have lost the sight in my right eye but it was not connected to the Scleritis.

I feel for you with the Scleritis- it is intensely painful. I expect you've got the tender eyeball and deep boring pain that often gets worse at night? That was something I particularly remember! I also experienced some Scleral thinning, but thankfully that did heal. I have been under the care of Moorfields for many years and they have been excellent. My treatment during flares (for corneal inflammation and Scleritis), consisted of high dose oral Prednisolone, continuing the mtx I already took and they added initially, a drug called Azathioprine which unfortunately didn't work for me, and then a drug called Cyclosporin (Neoral). This was the game changer. At first it was a very high dose, and then gradually lowered (as with the steroids) to the lowest dose which still controls things. I'm still on this drug, alongside those others now. I've taken it for about 26 years now. It does have long term side effects (what doesn't) but it's been worth it for me in terms of my other eye too. On the odd occasion the Rheumatologist has tried reducing it, unfortunately is when the Scleritis has relapsed. Restoring it got things back under control. Sometimes, they will also use a drug called Cyclophosphamide which is given by infusion. I've so far avoided that one (it also has side effects), but if it was necessary I would have it.

I had a biologic added in 2007. My rheumatologist contacted Moorfields for advice on the most appropriate. They suggested Infliximab or Humira. The least preferable was Enbrel. Obviously, more are available now, so this advice may well have been widened. I started on Infliximab but hadto swap to Humira a couple of years later due to problems with vein access for infusions. I've been on Humira ever since. I believe Hymiroz is a bio-similar for Humira as I was switched to it very briefly, so that's good.

As far as topical treatments- yes, steroid drops! Make sure your eye pressure is checked though in case you are a "steroid responder" who gets raised eye pressure. You can get Cyclosporin eye drops, but I'm not sure if a topical dose would be strong enough? Sometimes they will try both drops and systemic Cyclosporin.

Unfortunately I found the drops or ointment impossible to tolerate but others can - no problem.

Sorry it's such a long reply but I wanted to try and think of everything I could, as I'm well aware how lonely these things can feel. Apologies if I've mentioned things you already know! I hope you get things sorted. Good luck xx🤞🤞

[PSAWarrior28 in reply to Kags1068]

You have no idea how much your response means. Thank you so very much. I've only just taken 3rd dose of hymiroz so hoping that in the next few weeks I'll start to see improvement.

[Kags1068 in reply to PSAWarrior28]

You are very, very welcome. I'm so glad it was helpful. Really hope you see some improvement very soon xx😊🤞🤞

[Hidden]

Hi, I was diagnosed with scleritis 5 years ago in my right eye but also then in my left. I also have juvenile idiopathic arthritis for over 30 years. It was a shock to me to have my eye affected as I was never told it could affect my eyes. The pain was unbearable, that is something I will never forget. I am so sorry you are dealing with this. I was also very worried about loosing my eye sight as I have two young children. My treatment was steroid eye drops and once I had seen a rheumatologist they put me on methotrexate and a high dose of prednisolone. Unfortunately methotrexate didnt work for me and I was allergic to other DMARDS so I was put on Humira which has been brilliant. I still see Moorfields and at the moment things are ok having to take steroid eye drops once a day and having my pressure measured regularly. I really hope you are out of pain soon and the treatment works for you.

[Kags1068 in reply to Hidden]

Hi Deb

Your experience sounds very similar to mine! I've had JIA 30+ years too. I'm under the care of Moorfields (eventhough I live in the midlands), and they have been fantastic.

You are right in that once you've experienced the pain of Scleritis it's one you never forget! It's very distinctive.

My treatment has been very similar to yours, except as well as the Prednisolone and MTX, I hadto have Cyclosporin added, and the Humira when it became available.

I'm really glad yours is being relatively well-controlled and I hope it stays that way! 🤞

Best wishes x😊

[Hidden in reply to Kags1068]

Hi Kags Yes the pain is unlike anything else! I had never heard of scleritis so it was a bit of shock to me. I am pleased Moorfields have looked after you well and fingers crossed yours stays controlled as well. Take care of yourself and best wishes. ☺️

[Kags1068 in reply to Hidden]

Thank you!😊X