ra associated eye ulcers

[Emye343]

hi everyone,

I posted in this community quite a while ago about an ulcer in my eye which the rheumatologist said was caused by the ra. At the time, I was given some very helpful advice and information by Kags1068. Since then, I have had 4 more ulcers (my eyes take it in turns), and am currently in week one of 4 weeks of prescribed steroid drops plus antibiotic drops after developing another one last Tuesday . I’m into my second month of abatacept injections which don’t seem to be helping yet. I was off all medication for 3 months after open heart surgery in the summer caused by a toxic reaction to leflunomide which had seriously worsened my congenital bicuspid aortic valve . Anyway, that’s another story. … suffice to say that I can’t find the information which Kags gave me quite a while ago and I’m hoping that she will see this and kindly repeat it so that I can inform my ophthalmologist who has diagnosed the ulcer but seems to have no idea how to proceed after the steroids. I don’t want long term damage to my sight but I currently seem to be heading that way. Any help very gratefully received! Thank you.

[Boxerlady]

Hi Emye343, is this the thread?healthunlocked.com/nras/pos...

[Kags1068 in reply to Boxerlady]

Thanks for taking the trouble to post this link BL. Very kind and helpful of you.😊

[Emye343 in reply to Boxerlady]

Hi Boxerlady,

thanks so much for this. I searched for ages and just couldn’t find it!

[Kags1068]

Hi Emye

I'm really sorry to hear you are having corneal ulcer problems again. I imagine having to be off your medications could have allowed the inflammation to take hold again.

Boxer lady very kindly found the post and put a link to it. I hope you got it? Hopefully you will be able to read it through again and remind yourself about what we discussed. Anything else I can help with, I'll do my best. I will just say I'm recovering from a fractured elbow at present and it's hampering my use of my phone, etc. It felt quite a bit better yesterday, so I overdid it on the posting, and am paying the price today!🙄 I'm telling you this just in case you do get back to me and there is a delayed response, or if I have to try and keep it brief (not very good at that).

Very best wishes😊

[Emye343 in reply to Kags1068]

Hi Kags,

Thanks so much for replying. I’m sorry to hear about your fractured elbow, that must be so painful and quite debilitating too. Do you have to be off medication for it to heal?

I reread the posts from 2 years ago (where has that time gone?) and it certainly brought it all back to me. I had vaguely remembered you mentioning cyclosporine and brought it up with the ophthalmologist on Wednesday when I saw him. He said he uses it for children with very bad eye allergies but had never heard of it being used for this kind of thing and that was the end of the conversation ! I have another appointment in three days’ time so I think I will try to do my own research and show it to him. I’m seeing the rheumatologist again on February 1st provided that the plane gets in and will still be on steroid drops then. I now see a different rheumatologist who is much more approachable than the last one so, if I don’t get anywhere with the ophthalmologist I might make progress with him. I’m hoping that 2024 will be a considerable improvement on 2023, for all of us! X

[tinlizzie in reply to Kags1068]

So very sorry to hear about your elbow , you certainly don't need the extra pain and disability🙁. Hope you have lots of support at this difficult time and the fracture heals satisfactorily without complications. Sending a gentle cyberhug🤗.

[Kags1068 in reply to tinlizzie]

Aaw, thanks. I'll let you know the details. Just starting to get over the Xmas chest infection as well🙄 hope you are ok xxxxx

[Fruitandnutcase]

Hi Emye343,

I can’t add anything more helpful other than to say keep up with the preservative free eye drops all through the day and use something really ‘gunky’ at night.

If it’s any help I find I have to keep rotating the drops I use even though they are all preservative free. I’m using Theolose Duo at the moment. Just wait 20 minutes or so after you use your steroids or antibiotic drops.

I’m just so sorry to hear that you are still having problems with ulcers in your eye.

[Emye343 in reply to Fruitandnutcase]

Thank you! I have tried Hycosan which seems to help a bit. The ophthalmologist also recommended using a heated eye mask for ten minutes night and morning, which I’m trying to do - just as well I’m not working any more : by the time I’ve fitted in to my daily routine all these different things I now have to do , there’s certainly no time left for going out to work!

[Monkeysmum]

Hi Emye

Firstly, just wanted to say how sorry I was to hear about the troubles with your eyes, so scary when inflammation takes hold there. I’ve no personal experience of eye inflammation through RA but my son is on ciclosporine eye drops for a severe eye allergy (vernal keratocojunctivitis). When we were trying to battle for appropriate treatment for him I came across the fact sheet below re ciclosporine eye drops so I have provided link for you in case you find it helpful background reading also.

moorfields.nhs.uk/sites/def...

[Emye343 in reply to Monkeysmum]

Hi Monkeysmum,

Thank you so much for that. I have printed a copy and will show it to the ophthalmologist and the rheumatologist and see what they say.

[wilbertjellyfish]

You can private message Kags throw this forum too. Hope someone can help. Can only imagine the pain.

[Emye343 in reply to wilbertjellyfish]

Thanks. How do I do that? ( I’m not very computer literate!)