Rheumatoid eye disease

I've never thought to ask this from either rheumatologist or ophthalmologist before but perhaps someone here can enlighten me. Does active rheumatoid eye disease means my overall disease activity is high? Is it relevant when being reviewed at rheum clinic as my rheum (lovely as she is) doesn't seem that interested? My joints are no worse than usual (!) and I'm not really keen on changing biologics again, although it's been suggested. But my eye disease has flared up really badly and I wonder if it's a sign that my RA is not being managed?

I think this is one of those times when specialists defer to the one there and keep suggesting to talk to the other one. To their credit, they both send letters to one another but it leaves me quite confuddled!

12 Replies

  • I don't think eye disease activity always correlates with joint disease activity - it definitely doesn't with spondyloarthritis.

    Are you getting your eye disease treated by an opthalmologist or eye clinic though? I wouldn't leave it up to a rheumatologist to deal with it - it definitely needs to be kept under control or it can do lasting damage to your eyesight. I don't known whether yours is scleritis, or iritis, or something else, but all the types of eye inflammation that go along with rheumatic diseases need to be treated properly, and quickly. I've been told that the moment I notice it flaring I'm to just go straight to an emergency eye clinic and tell them I have AS, and I will be seen urgently.

  • I have recurrent iritis and episcleritis. I see my ophthalmologist for my eyes and Rheumy for the rest. I think they told me eye inflammation is " associated" with RA but you obviously can get one without the other.

    I find my eyes flaring is often a sign that my joints are about to do the same. I have a " fast pass" to my ophthalmic unit if I get a red or painful eye or lose vision and get steroid drops straight away.

    So I don't know If there's a direct correction but most of the docs I have seen just seem to think the conditions are interlinked. Do ask the docs when you see them, I would be interested in their opinion and knowledge. And I do think it would be good as u say to continue to tell your Rheumy about your eyes and vice versa as both conditions may be better controlled when your RA is more controlled , at least this is what I noticed.

  • Ditto on what Earthwitch and Allanah said.

    I too have bouts of iritis/uvietis and go on steroid drops to calm it down but I dont think its related to my flaring (although I have to say, I am seldom out of a flare). The doc did say it was due to my auto immunity and inflammation. Sometimes they increase my drops to 4 times a day and then it responds (but only a doctor should increase them). If you are on drops of any kind and it isnt working then I would suggest you go back to your opthalmologist if you have one, you might just need to increase the amounts.

    Yes I have lots of docs who would rather leave things to another doc if they are able to. So I now always give a push it if I think its their responsibility. I dont think its because they dont care - its usually that they have to take time to: 1... diagnose, 2.... think of what to do about it, 3... medicate while making sure it wont conflict with your other treatments, 4... write to the other docs to let them know what changes they made, 5... get you back to see if you responded or adjust the treatment. So I think they see it as easier to just let the other docs do it.

    Trouble is you pay all this money (in my case my last rheumy visit was $550 but only cost me $170 out of pocket after medicare) so you expect you would get their full attention!!!!

  • Hello I agree with all above. I also have associated eye problems from the RA. My eyes have been particularly bad in the past what with severe dry eyes and a corneal 'melt' in both eyes one worse than the other..both due to RA. Its all quite scarey but my optamologist introduced punctual plugs and I haven't looked back..they are nothing short of revolutionary. I also have steroid drop/ointment for flare ups which can come and go but I am not sure if these are connected to disease not being managed as I am on embrel and sulphazalazine combined which is controlling things mostly in my joints.

    I think you can have a 'flare up' anywhere and this can include the eyes. Keep on top of it as I Have also been told that if I neglect my eyes things can go from bad to worse quite quicky. Get advice from different consultants in each area. They are only human and it's not possible for one person to know everything about the human body as complex as it is, as each are experts in their own field of work. They should also communicate with each other. Mine send letters to each other including my Gp and myself so we all know what's going on. I also try to see my opthamogolist privately as the eye clinic does seem to be splitting at the seams with so many people in the clinic. the NHS is under so much strain, but if it's your eyes don't delay being seen .. Good luck x x

  • Hi my friend, I too have rheumatoid arthritis. I was getting along fine, when, one day I woke up with my right eye very inflamed, red, itching and watering. I contacted my GP. He did not have the right equipment to examine the back of my eye, so he sent me off to Emergency eye care with my notes. Further investigation showed that I had scleritis, and needed immediate treatment. I was given steroid drops to be used for a month, which cleared up the problem. But my right eye is weaker than the left. When this happened my joints were no worse that before, it was just something out of the blue.

    I hope you can get a solution to your problem soon. Best of luck. X

  • Hello there,

    I have read this thread of conversation with interest because I have been having eye problems recently, but haven't considered a connection with RA. I mentioned my red itchy watering eyes to my GP and he said it's nothing to worry about. Then a couple of weeks ago I had a spate of flashing white lights out of the corner of my right eye which resulted in a black dot permanently in my field of vision, like having a fly in my eye. Another GP in the practice sent me to eye casualty , the result being that something is going on at the back of my eyes which if I'm not careful could result in a bleed and blindness !! I've since noticed a general deterioration in my eyesight. I would be hugely grateful if anyone of you could enlighten me.

    June x

  • My wife had redness and watery eyes, went to eye casualty, had eye tests, eye casualty gave eye drops, every few hours and then reducing to four times a day for one month. Over the last three years this problem did come back after eleven to twelve months, each time trip to eye casualty eye test and eye drops. At the moment no problems.

    The problem is called " Iritis" . (Iritis (i-RIE-tis) is inflammation that affects your eye's iris, the coloured ring surrounding your pupil. )

    I am not sure every GPs know of this problem. Luckily my wife went to the eye casualty.

    Please do go to eye casualty to get second opinion.

    good luck.

  • You may find that any autoimmune diseases would affect eyes, lupus, sjogren's, thyroid etc..yes, R.A. Affect anywhere, any organs, skin, vessels, indiscriminately in my own experience.

  • Thank you omega, that makes sense to me. June x

  • Thank you for the replies. I am being monitored by an opthalmologist and an optician who has a special interest in diseases of the cornea. I am a bit unsure about the opthalmologist, he's very nice and actually an old school friend of my dad's but he was a bit vague. Maybe I'm being unfair because my eye issue seems to be quite stubborn and persistent which is frustrating. I also hate eye drops. :( Since my hand joints have deteriorated, I've found it harder to administer the drops myself and freak out when anyone else comes at me with the drops too, so that's not a solution. The only thing that really helps is steroids but they're not a viable long term option.

  • I know what you mean about using eye drops with rheumatoid hands. There is a brand of eye drops for dry eyes called Hycosan which is a chubby bottle easily held. I wonder whether other types of drops could be dispensed in similar bottles.

    Meanwhile I have learned to put my drops in as follows. Lie on my bed with a reading lamp at the side. (So I can easily see the drop falling into my eye). Rest my hand on my brow bone to keep it steady. Use my other hand to pull my lid down.

    I even managed when I had a broken wrist and I can also do it left handed after much practice.

  • That was the first thing that happened before I was diagnosed with RA and Fibro.... well, along with the horrible fatigue, painful joints etc. I went to the eye doctor and they said I had something called SLK conjucuvitis ( not sure that is spelt right ). I am also on Plaqunil and am monitored every 4-6 months. I have noticed that my right eye has gotten so much worse and they are treating me with Travatan which is to keep the eye pressure down. My eyes seem more sensitive to light... even house lights and headlights and even sunny days. But, my opth doctor says it all looks good. When I first went to her my eyes looked horrible.... red, swollen, felt like sand in them. She gave me drops and it helped after a long time. Now I put the Travatan in every night for pressure, but I can say my eyes have certainly gotten worse since RA. I could not do the eye plugs for the dryness.... they kept popping out or scratching my eye. It is scary when my eyes seem so blurry or they actually hurt.


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