Lupus and episcleritis or scleritis?

[Andfiona]

Hi everyone I hope you are ok. Please can I check has anyone with severe lupus on immunosuppressants and prednisolone already had episcleritis or scleritis which is inflammation of eye? If so did they resolve ok? What treatments did you get in addition to what you have already? Many thanks

[Spanielmadlady]

Yes I've had scleritis this week for the first time.scleritis is a medical emergency as I found out when I saw my dr.i was sent to the eye clinic as an emergency the the treatment i was given is steroids,antibiotics and lube.if it's not treated asap you can lose your sight .the main thing with scleritis is pain down the face ...I've never experienced pain like it and no pain relief touched it x

[Andfiona in reply to Spanielmadlady]

Yikes I’m really sorry to hear that are you ok now? They are pretty sure mine is episcleritis pain in eye not face but I’m seeing the ophthalmologist on Tuesday to be sure. Im just wondering how it’s going to get better with no immune system they’ve given me artificial tears but my eye’s not dry. And I’m wondering how sore does it get before you go to a and e. Thanks so much for taking time to respond.

[Spanielmadlady in reply to Andfiona]

Episcleritis isnt painful. I take mycophenolate and I'm steroid dependant so have no immune system. As I i understand it episcleritis clears up on it's own.the medication I've been given is in the form of drops and gel.scleritis has links to RA ,lupus,sjorgens and IBS.ive put a photo of my eye.it is healing I've got to back to the hospital the 29th march.im still getting some discomfort in it x

Believe me the pain would send you to A&E I guess it's how been smacked in the face with a baseball bat might feel .I rang my gp who said to go down.as soon as he saw my eye he said he had to send my to hospital x

[Andfiona in reply to Spanielmadlady]

Thanks again. I really appreciate this. My pain is not as bad as you describe but eye looks similar. Will hang on but feel more confident to go to a and e if gets worse now. They said to do that if it gets worse. Thanks again. I really hope you feel better soon, take care

[Spanielmadlady in reply to Andfiona]

Photophobia is a main symptom of scleritis too.im sat in the house in sunglasses 😎.Do go if the pain goes down your face to your jaw .I hope it clears up soon for you too.sending hugs your way 🤗 xxx

[Hidden in reply to Spanielmadlady]

You poor soul no wonder your eye was sore that looks incredibly painful I wish you a speedy recovery. I had trigmenial neuralgia many years ago doc then said it was because the herpes I had in my lips,really awful massive blisters top and bottom after a dental visit,had travelled to my eye and was what caused the T.N Looking and learning from you now I doubt I’d be as easily convinced these days,he gave me painkillers and said just lie in a darkened room,I was months before I recovered.I think now is for anything that creates that type of pain or discomfort go straight to a and e is definately sound advice.Hope it eases up very soon for you all xx

[Melba1]

I’ve had both as my overall disease has got worse in multiple areas.

If you don’t know for sure and it’s painful (especially a deep pain behind the eye) then best to get checked out as eyes too important.

Episcleritis is considered a sign of disease activity but not sight- threatening and usually resolves on its own but scleritis needs emergency treatment. Mine got better quite quickly on higher steroids.

My ophthalmologist said due to all the immune dysfunction and complexity etc to go to them quickly even for episcleritis which in a ‘normal’ person would usually be quite harmless.

Are you flaring everywhere else too? X

[thekeys46]

Hi,I have scleritis

The only way it has been controlled is by going on Humira.

I had to fight to get a referral to a research eye hospital as nothing else workedxc

[Spanielmadlady]

I hope your eye is feeling abit better today . Finally managed to post pic from the front.

Scleritis in right eye

[TheThirdGirl in reply to Spanielmadlady]

Hi I have had slight episodes of scleritis in the past but the major one was about three weeks ago and you are absolutely right, the pain took me to A&E . In addition to that I had a cyst going on at the same time in the same eye. The pain and the photophobia was terrible. I couldn’t even cope with just sunglasses I literally had to cover the whole of my eye so that no daylight was entering it at all.When I finally got seen at A&E they treated it with steroids and antibiotic drops. Also NSAIDS.

After about a week the doctors told me to decrease my steroid drops gradually over four weeks. During my first week of reducing, the scleritis came back and I immediately had to go back up again. I’m now trying to reduce them again and crossing my fingers that it doesn’t come back.

I do have a question though that none of the doctors seem able to answer, does an episode of scleritis mean that your lupus is flaring or can one happen without the other??

[Spanielmadlady in reply to TheThirdGirl]

Hi...Yes that's what I was given...awful pain isn't it.ive not seen my Rheumy to ask so this is my own opinion based on my own episodes.i don't think or feel that all my lupus was flaring. I felt it was just the sjogrens had been triggered by something .when I see my Rheumy I want to ask if it could be connected to steroid drops 🤔.when I started to drop I had a couple of minor flares and then it settled...ive had nothing since.ive also had several large subconjuctival haemorrhages like the one I the pictures. I hope it settles for you. Scleritis and episcleritis can happen to anyone but it is more common in people with sjogrens and lupus. Kind wishes SML xx

[Andfiona]

Thanks so much to everyone for all the advice very helpful. I really hope you all feel better soon too. I saw ophthalmologist today and she has given me eye drop steroids for episcleritis hopefully it will resolve soon. I’m not flaring elsewhere hopefully anyway (assuming kidneys are behaving themselves!) take care all