I’m writing this post at 3 in the morning as I just can’t sleep. I had an emergency appointment with the consultant eye specialist this evening as I have developed another ulcer on my cornea (my gp described it as “a small hole “ - very disconcerting!) This is the second one in three weeks and the consultant says it’s part of an ra flare. I’m flaring in my wrist and left leg at the moment, but never dreamt it could manifest as ulcers in the eye! I’m worried that, if it continues like this, it’s going to eventually affect my sight. I will leave a message for the ra nurse in the morning in the hope of getting an appointment with the rheumatologist - the consultant said this will keep happening until my ra is better controlled (currently on humira). The trouble is that I live in Guernsey and a rheumatologist is rarely seen on these shores! They get flown in occasionally and appointments are like gold dust, booked up months in advance. Well, I have to try. In the meantime, I wondered if any of you kind people have experienced anything similar and might have some words of reassurance to offer?
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Emye343
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Oh you poor thing. I know RA can affect every part of us, but have never heard of this one before. Hope you get to chat to someone first thing. If someone on here has had something similar, I am sure they will be in touch later (I’m up at silly o’clock too). Take care x
I’m very sorry to hear you have this eye problem. I know (as I’m sure do many others), what you mean by lying there at 3am and worrying. Things always seem worse at that time, and for me, it’s one of the times i feel most alone with it all.
Back to the eyes. Yes, I’ve had corneal ulcers in the past. I won’t go into too much detail about my experiences, as I’ll probably end up telling you about things that will never apply to you!
As always, bearing in mind the caveat that I’m obviously not medically qualified, I’ll just explain the treatment i was given in the very early stages.
Is the second ulcer in the same eye as before? I’m assuming the previous ulcer has healed, which is a very good sign. Most corneal ulcers will heal within a few days to a couple of weeks.
Did the ophthalmologist give you a follow-up appointment for him/her to check it? Did they give you any treatment for it? Is it very painful, or not too bad? Initially i was given antibiotic eye drops, just in case there was an infection element to it - there wasn’t but i think it was a covering all eventualities approach. I was also given steroid eye drops to try and bring the inflammation under control topically. Don’t worry if you haven’t- it may not be necessary for you.
I’m assuming you possibly have some kind of dry eye problem relating to the RA? If so, the really, really important thing is to keep your eyes moist. My eyes are very dry and i have to use lubricating drops every 15 minutes or so, which i realise is quite extreme. The point I’m trying to make is don’t be afraid to use them very regularly. Please make sure you always use preservative free eye drops/ointments/ gels though, as the preservatives used can irritate the cornea. For overnight, try and use a more long lasting lubricating gel or ointment. (You can use these in the day too if you wish).
Your eye Consultant is correct. The key to keeping the ulcers properly at bay, is getting the underlying disease inflammation under control. I was lucky and my rheumatologist and Moorfields eye hospital worked together on this. It started a number of years before biologic were available, so it’s good you are already on Humira, as that was one of the biologics Moorfields recommended when they did become available. At the time i was on Methotrexate (still am). The other drugs added were oral steroids and one called Cyclosporin. I still take both of these too. Moorfields added the Cyclosporin (it is used sometimes for Rheumatoid too), and that one seemed to have the most effect on calming the eye inflammation. I also trialled Cyclosporin eye drops, but couldn’t get on with them. Nowadays there is a tried and tested formula of Cyclosporin eye drops available called Ikervis. Much more refined than those i trialled years ago! If you can get on with them, they can work very, very well. I don’t know if your eye consultant mentioned any of these things?
Finally, do contact your rheumatology team. I would say you definitely need your Rheumatologist’s input. I could be wrong obviously, but i would be very surprised if your rheumatology nurse has much knowledge or experience of this kind of problem.
Apologies for the long reply. I was trying to think of anything that could be useful. I hope it helps! Please feel free to ask if you have any other questions. Very best wishes.
Hi Kags1068,Thank you so much for taking the time to write such a detailed reply: it has been both illuminating and reassuring- I might sleep tonight! To answer a few of your questions, yes the second ulcer is in the same eye as the first - is that significant? The previous ulcer healed in about a week. I have a follow up appointment with the eye specialist next week. In the meantime, I have to put exocin antibiotic drops in every hour whilst I’m awake - a belt and braces approach he called it. I haven’t had any previous problems with dry eyes and have in fact worn contact lenses without a problem for about 30 years. I hope this doesn’t spell the end of that period of my life. You were right, when I managed to get hold of the ra nurse (no mean feat!), she had no knowledge but I think I worried her sufficiently (she has a lot on her plate with no rheumatologist based on the island) that she has arranged for me to have the first available appointment with the visiting rheumatologist when she flies in on March 16th - I’m very relieved as I have in the past waited many months to see one. I will mention the Ikervis eye drops to the eye specialist when I see him next week. One final thing, have your eyes deteriorated in any way as a result of these ulcers or does the medication keep things at bay?
Sorry for my delayed reply. I’m really pleased my response may have helped a little. I asked about whether the ulcer was in the same eye not because i thought it was significant, but simply that it’s good (not really the right word to use), if it’s happening in one eye only as opposed to both. Really pleased you’ve got a follow-up appt and antibiotic drops in the meantime. I meant to ask whether you used contact lenses, and if so, that you aren’t using them at present. Then i noticed that Fruit & Nutcase had already very astutely asked that one! I’m relieved the rheumatology nurse took you seriously and has sorted out an urgent rheumatologist appointment.
I’m a bit wary of how to answer your final question. Unfortunately, one eye deteriorated and yes, ultimately it affected the vision. I would really stress though, that this was a long way down the line, after many complications and very aggressive disease. I’ve always been told that this level of complications are very rare. In fact, the Professor i was under the care of at Moorfields (until his retirement) for some time used my case as a teaching case. I’m only sharing that bit just to stress how unusual it was, as I don’t want you to start imagining all kinds of things. My other eye stabilised, and apart from the odd blip with Scleritis, it and the vision are fine.
Please feel free to respond anytime if you have any further worries. Best wishes.
Gosh, I’m sorry you are having such an awful time. I hope by now you have made contact with your RA nurse and she can help. I don’t have experience of ulcers but did your eye specialist or doctor not offer antibiotics to prevent infections or any sort of treatment like steroids until you can see your rheumatologist ? Or even preservative free eye drops to keep your eye hydrated? I hope you can get sorted out soon.
Hi Fruitandnutcase,Yes I’ve been put on antibiotic eye drops hourly for the next week. I’m relieved to have arranged a consultation with the visiting rheumatologist for March 16th. It seems a way off now, but we’re used to waiting, aren’t we?
I only noticed Kags excellent reply to you after I replied and I’ve read your response to her too. Glad you have a follow up appointment with your eye specialist and antibiotics - not to mention that you’re seeing the rheumatologist next month.
Dare I say it - I hope you’re not wearing your contact lenses until the eye specialist gives you the go ahead.
Hi Fruitandnutcase,I did sleep better thanks but my ulcer has tripled in size this morning ( my iris is disappearing…). I’m currently in the surgery waiting for an emergency appointment with the on call ophthalmologist. My vision is being affected now and I need to keep sunglasses on as the light is bothering me - this really is the disease that keeps on giving…
Oh no! I’m really sorry to hear that. I’m sure your ophthalmologist will pull out all the stops to help you and I’m sure there must be more he/she can do.You’re so right - RA certainly is the disease that keeps on giving - a bit like I’m finding with old age - put the two together and the possibilities are endless ☹️
Anyway, good luck, I hope you’ve had your consultation by now - we’re all sending good wishes your way.
Hi Fruitandnutcase,The consultation was fine though he has quite an abrupt manner to say the least -gave me the worst case scenario initially (ie. if we don’t treat this it will make a hole and you could lose your eye), then went on to tell me we weren’t on that trajectory yet! No bedside manner really but I think he knows his stuff. He’s put me on a month of steroid drops. I’m hoping that, because they are drops, they won’t have the usual side effects associated with oral steroids? At least, I hope not. I already have osteoporosis of the spine and don’t want to make that worse. I have to see him again next week. I’ll keep you posted! X
Gosh, your consultant sounds exactly like an eye consultant we know. Absolutely no bedside manner, took no prisoners and was honestly one of the best consultants around. His patients loved him once they got used to each other. No idea about steroid drops and bones - I must say I worry about asthma inhalers but people keep telling me they don’t affect your bones so I just keep my fingers crossed. Good luck.
Apologies as i replied to your earlier response before i saw your latest post. I’m so sorry the ulcer has worsened. I can well imagine how uncomfortable it must be, and it will definitely be more sensitive to light, so keep those dark glasses on. Thank goodness you have got an emergency ophthalmologist appointment. He may possibly decide to add some steroid drops now as well. I would imagine they will keep a close watch. Is there any chance they would liaise directly with your rheumatologist if necessary?
Do please keep us updated and again, ask anything you might wish and I’ll try to answer!! Wishing you well. 🤞x
Hi Kags1068,I’m so grateful for your detailed comments as someone who has been through this already. It is quite scary. He’s put me on a month of prednisolone eye drops . I was surprised it was such a long course as I thought they would work quite quickly. I have to carry on with the antibiotics too. That”belt and braces” approach again! He was a very blunt character (as I said to Fruitandnutcase, no bedside manner), and there’s certainly no suggestion of him liaising with the rheumatologist- or even sharing the notes of my visit with him as “they are on a different system “ - which is ridiculous, but he seems to know his stuff anyway.
Do you mind me asking what ra medication you take? He suggested I should do my own research before I see the rheumatologist (!), but thought a jak might be best since the humira doesn’t seem to be helping much.
I’m worried about taking the steroid drops as I have quite severe osteoporosis of the spine already and don’t want the steroids making it worse - do you know if they have the same side effects as eye drops as they do taken by mouth? I know I’m asking lots of questions, and don’t feel obliged to answer them all, but I’d be grateful of any information you could give. Xx
You are welcome. I know what it's like to feel alone with it all, and yes, it is very scary.
From my experiences, he's done exactly the right thing by starting steroid drops. Are they preservative free Prednisolone, or has he gone for Dexamethasone? Either will be fine. How many times a day? It's good you are carrying on with the antibiotics too. A month isn't that long a course for something like this. I still use them now (although less often and a weaker formula and it's about 28 years since it began)!! He will want to be sure of any inflammation settling and staying settled.
You're right it does seem ridiculous when they say things about "different systems" and I often wonder if it's entirely true. Different system or not, there's nothing stopping him sending a letter to your rheumatologist to appraise them of the situation!
I wouldn't worry about prednisolone eye drops causing problems with the Osteoporosis. It's really not the same as taking oral steroids. I have bone issues too and have had a few fractures, but it is down to taking oral steroids for many years - in part due to the eye problems. The main thing to watch for if you've never used steroids eye drops, is that some people can be what's known as "steroid responders." What that means is the steroids can cause a rise in pressure in your eye which would mean you would start to get a lot of discomfort and bad headaches. You are seeing the doc again in a week, so I'm sure he will check the pressure just to keep an eye on it. Again, it by no means happens to the majority of people.
With regard to medication, I take Humira, Methotrexate, Prednisolone, Cyclosporin and Hydroxychloroquine. With the eye issues it could mean you may need to be on more of a cocktail rather than just one drug. (That's assuming you take Humira in isolation). As I said before, I was only on MTX when it all began - biologics didn't exist. Oral Prednisolone was added immediately; Azathioprine was added briefly, but it didn't work for me. When my local eye unit referred me on to Moorfields, it was them who added the Cyclosporin. This drug seemed to have the most effect and I still take it now. When biologics first became available, Moorfields recommended Infliximab or Humira -not Enbrel. I don't know what the stance is on JAKs and eye inflammation. The other one my rheumatologist has mentioned switching me to if the Humira becomes less effective is Rituximab. Apparently that's ok for eyes too. The last resort (in my mind), is Cyclophosphamide. I was threatened with that years ago, and the Rheumatologist mentioned that recently too. It would be my last choice (if I had one). I hope that helps a bit regarding the meds?
Your Consultant does sound rather blunt, but I expect he's trying to get you to realise the importance of sticking to the drops regime. Unfortunately he is right about saying that if an ulcer perforates you will have a hole in your eye - it's what happened to me.
Again, very rare, and I'm glad he made it clear you are not on that path.
I'm sorry about the long reply again. I just keep trying to think of everything. I couldn't find out information back then, and even most of the local eye docs had never heard of it in relation to rheumatoid. I'll never forget how scary the total lack of information was. It's hard to find the right balance! Again, I really don't mind trying to answer any questions. If my experience can help someone else, then I guess that gives it some meaning. I hope it's more comfortable very soon.
Hi Kags,I just wrote you a long reply and pressed the wrong button and the whole thing disappeared- Infuriating! Thank you so much for answering my questions. My eye is feeling a bit less light sensitive today - I’m not wearing my sunglasses quite so much inside (my son finds that very amusing…). How long did it take for you to see improvements with the steroid drops? Thank you for putting my mind at rest as regards the side effects.
Like you, I started out with mtx but found that very toxic. I was on it for three horrid years. I’ve also taken hydroxychloroquine, sulphasalazine and enbrel, all of which made me Ill.Humira is the first medication which I could tolerate, though clearly it isn’t working well enough to prevent flares like this one. It took 7 months to start working. I’ve done a bit of research and come up with tofacitinib and toczilizumab so far which apparently can prove useful in combatting ra related eye problems. As you said, rituximab is also on the list but, as it’s an infusion, they won’t sanction it here.
I hate the idea of being on a cocktail of meds but it looks like I won’t have much choice in the matter. I will keep you posted as to the progress with my eye. Take care and thank you so much!
The first thing I'll say is 🤬🤬! It's so annoying when that happens when you've typed a message. I seem to do it quite regularly.🙄
I'm so glad your eye was feeling a little better yesterday. That sounds like a really good sign. Also good your eyes are a bit less light sensitive - that's a good sign too. Perhaps you won't need the dark glasses indoors at all soon? (Obviously that will spoil your son's amusement though - haha)😁 I think with the steroid drops, you can usually expect some improvement within about 2-3 days. They normally work quite quickly. Glad you feel less worried about the side effects.
I'm sorry you've had problems with all those other medications. It can be very difficult (and unfair) when lots of them upset you.
Yes, it does sound as if the Humira isn't quite controlling things enough. It's a shame, as you've been able to tolerate it. You've definitely done your homework on the other drugs - I'm sure that will prove useful. I'll have to look up Tofaticinib and Tocilizumab as I've heard of them but don't know much about them. It's a shame
Oops!I pressed send too soon, and for some reason my phone won't let me edit it - grrr!
I was about to say it's a shame about the Rituximab. What a pain that you aren't able to access infusion treatments.
I can absolutely understand your reluctance to be on a cocktail of meds. At this point though, your eye has to come first (I know you know that)! Perhaps if that does happen, it may only be temporary? As I've mentioned, Cyclosporin was the drug that finally had the most control on my eye inflammation. Although obviously, your rheumatologist will know what is best for you. I've only mentioned it again as it's not used much anymore, and often, they don't consider it. (My rheumatologist said that to me recently).
Anyway, I hope the eye is feeling better still today, and yes, please do keep me posted.
Hi Kags,The day started off well with less light sensitivity but, this afternoon, it feels as though I have something in it all the time. I’m trying to reassure myself that it’s probably because it’s starting to heal the ulcer( you know, like when stitches start to pull and itch when they need to come out), but thought I would just ask for your experience in case I’m barking up the wrong tree. I’ve had two full days of drops now, so things should be healing? I think I’m getting paranoid about this! Sorry to bother you again. X
Please don't apologise. It's really not a bother. I know how scary it is and how you worry that every little sensation means something bad. It's completely understandable.
Again, I'm only suggesting, but it almost sounds as though that eye is feeling a bit dry? That can give a very gritty uncomfortable feeling - like there's something in it. It can also make the eye more uncomfortable when you blink as the eyelid is blinking over a dry surface rather than a nice moist one. A bit like having the window wipers going on a dry windscreen (if that makes sense)? Also, if there's any chance your eyelid could be a little bit swollen (all the fiddling and prodding etc perhaps), then that can make it run a bit less smoothly over the eyeball. If you do have any lubricating eye drops (preservative free) then do use them regularly. Just try and wait about 10 minutes after the steroid or antibiotic drops.
If the eye were to get worse (and I'm sure it won't), it would get more red, and much more painful. If however, you become seriously worried about anything, don't hesitate to contact your local eye casualty. I'm only saying that in case you should feel worried, not for any other reason. As for the steroid drops, I would expect it to easily be 3-4 days before they can really start to do their stuff. If
or when it was hurting or uncomfortable, I used to find keeping it closed more comfortable and like it gave it a bit of a rest. I think it always felt at its best in the morning after I had been asleep and had it closed all night. Don't know if that's the same for you?
Again, don't worry about asking me - I genuinely don't mind. My only request is that you do get proper medical advice if you are seriously worried. (I'm sure you would). I'm very happy to share my experiences, but also aware that it might not be identical for everyone.
Hi Kags,That is very reassuring. It could well be dry and the eyelid is definitely swollen (one of the side effects of the antibiotics according to the leaflet). It doesn’t look any redder at the moment, which is also reassuring- thank you. I haven’t got any lubricating drops but i will definitely buy some as soon as I can - sounds as though they would be a good investment! I’m due to see the ophthalmologist again on Thursday, but I won’t hesitate to call them if things look worse. I hope you get a good night’s sleep too. X
Hi Kags,I hope you had a good day. Just a quick question: I noticed you said the steroid drops should be preservative free. Is this important as mine don’t seem to be and my eyes are getting more itchy and uncomfortable although the ulcer itself seems to be shrinking (thank goodness). X
I've just seen your message. Firstly, I'm very happy to hear the ulcer appears to be shrinking - that's such good news.
Secondly, which steroid drops are you using, and how many times a day? If they are the only treatment that has changed recently, and it's become more irritated as the days go on, then I guess there's a chance the preservatives in the drops could be causing irritation.
I think you said you see the doc again on Thursday? If so, be sure to mention it and ask him if it could be the drops. If he thinks it's possible, then he should be able to change the drops to preservative free if he thinks you need to continue with them for longer. Preservative free ones often (but not always), come in single unit dose minims and you start a new one for each dose.
Irritation is a problem with preserved drops, and the more regularly you've hadto use them, the more chance there is that the preservatives may irritate.
Hope that helps, and hope that ulcer continues to improve X🤞🤞
Hi Kags,Thanks for responding so promptly. The drops just say”prednisolone sodium phosphate 0.5%” and I’m using them twice a day. I will be sure to mention it to the eye specialist on Thursday. I’ve been given an appointment with a locum instead of the eye specialist I saw last time (because it’s short notice I think). I hope he knows his stuff!
It's hard to tell from that description whether or not they're preserved. They may not be, but you need a label with ingredients to know for sure.
Yes, I hope your locum is OK too. Hopefully, he will be very good. It's always a bit nerve-wracking, though, when you've got something ongoing like this, and you see someone different. He will have the other docs notes to look at, too.
Do let me know how you get on. Again, I'm really, really pleased the ulcer is looking smaller. Hope it's a bit more comfortable too X🤞
Hi Kags,Yes I had my appointment yesterday. I saw a locum eye specialist over from the uk. He was very nice and pleased with the improvements, though he did tell me that it was likely to keep happening until my medication was adjusted. He also told me that, if I were in the uk instead of Guernsey, my care would be shared between the eye hospital and rheumatology but, here, the system is very different and there is not even liaison or contact of any sort. He very kindly said he would write a letter to me which I could present to the rheumatologist when I see her on March 16th detailing his findings and their cause, in the hope that will help. My eye is feeling much more comfortable at the moment.I expect it will stay that way whilst I’m on the steroid drops. He told me I could stop the antibiotic drops now - a relief not to put them in every two hours. He also told me to start using dry eye drops day and night. Thank you so much for all of your help and advice - I willlet you know what the rheumatologist has to say (just hoping fog doesn’t prevent her coming in - as it did last June wh3n I was meant to see her…). X
Thanks for letting me know how your appt went. The locum doc does sound nice and a bit more approachable, perhaps?
I can definitely back up what he says in that my problem didn't settle until the disease was better controlled systemically. I hope that the rheumy acts promptly. I thought it was strange that there was no liaison between the specialities, good old different "systems," Eh? Not always helpful, are they? It's excellent that he is going to do a letter for you, though, very helpful.
Most importantly, I'm very, very pleased to hear it's improved. What a massive relief. Such good news. It's good you can cut out the antibiotic drops too. I can certainly see why you would be continuing with the steroid drops for now. Eventhough it's healing, the drops should carry on helping to keep the inflammation under control, so it doesn't recur.
Definitely get those dry eye drops as soon as possible. It will help keep that healed surface nice and moist. If he didn't recommend any in particular (or prescribe any), then it's very much up to you which you try. Sometimes using an ointment or gel overnight as well helps. Whatever you decide to buy, please just make sure it's preservative free. Use the drops as frequently as you wish. The main thing is not to let the eye dry out.
I'm really pleased if anything I've said has been of use to you. You are most welcome.
Please do let me know how your rheumatology appt goes, barring any pesky fog, of course!😡
Again, I'm really pleased it's healing and improving.
Hi Kags,I did it again- wrote you a long catch up reply and promptly deleted it! Infuriating!
Anyway, I wanted to tell you that the visiting rheumatologist got in (despite the heavy mist) and I was her first appointment. She se3med flummoxed by the eye ulcers and said they were a problem of 20 years ago before they had medication like humira (which clearly isn’t cutting it for me). I’d done my research and she seemed glad of it and is going to try to set up infliximab infusions - a surprise to me as they didn’t appear to be on offer here (we shall see). But I also have to start leflunomide otherwise my body will reject the infliximab. She suggested methotrexate but I had 3 horrid years of that… I do t like the sound of leflunomide either but just hoping I won’t get the common side effects. Thank you for all your help and advice. I will let you know how it all goes. Forgot to add, she’s going to refer me to Southampton hospital if this doesn’t work.
Oh no! That's so unbelievably frustrating! I've done that a number of times, too. It's usually followed by a bit of ripe language!😁
Thanks so much for updating me. I remembered you had a rheumatology appt due, but I didn't like to ask as I didn't want to be a "pesterer!"
I'm glad the rheumy made it over to you, as it was rubbish weather on Wednesday. Just out of interest, is your rheumy on the younger side? I'm not surprised she was a bit flummoxed. My ulcers first happened in 1993 when I was 24, and it wasn't a commonly seen occurrence then. My rheumy was pretty experienced, though, so that helped. A lot of younger eye docs I saw at times over the next few years had never heard of corneal ulcers and RA, let alone seen them! I imagine with the advent of biologics, it does (hopefully) happen even less now. Having said that, though, the eye docs I've come across in recent years are actually aware of it! Both my rheumatologists since have been very up on it. I think I said before that my previous rheumy liaised closely with Moorfields on my treatment. It was them who initially suggested Infliximab or Humira as the biologics to go for back in about 2006 - this was before others were available.
Obviously, the Humira isn't cutting it for you, and things need to change.
Infliximab worked for me for a couple of years. I only had to change it as I have problematic veins, so access became increasingly difficult. I felt very well whilst on it. As you say, you've got to clarify if infusions can now be made magically available to you! I will stress that it was the cocktail of drugs that eventually helped me. I was already on MTX
So I was told "it shouldn't have happened," but like you, it did! The crucial addition was Cyclosporin. I don't know if your rheumy would be familiar with this drug - it's not used that much now. (I'm only reminding you about this one in case you run into future problems - more than likely you won't)! The other alternative to help control the corneal inflammation that leads to ulcers is using Cyclosporin eye drops. They are marketed under the name of Ikervis. You could possibly mention those to the eye doc or your rheumy if helpful.
Finally, drugs wise, the alternatives mentioned by my current rheumy in case the Humira etc stops controlling things well enough were either Rituximab or Cyclophosphamide. You could just bear these in mind in reserve. Again, hopefully, it won't ever be necessary. To be honest, though, I would hope your rheumy would go off and do a bit of research of her own. Not entirely fair to expect you to sort out something so complex!!
As for the Leflunomide, I've never had this. I hope you won't get the side effects. Unfortunately, you probably will need to try it to get the best effect from the Infliximab. I can certainly understand your reluctance, though.
If she does refer you to Southampton, will this be for eyes, or rheumatology, or both? I hope you don't have to go to that trouble.
How is the eye anyway? I hope it's continuing to settle down nicely?
Anyway, thanks again for updating
and do keep me posted. Again, feel free to contact me if you have any more questions, etc.
Just had a thought Emye343 - why don’t you contact the Royal Osteoporosis Society helpline nurses and ask them about possible effects of steroid eye drops - there is a Health Unlocked ROS site called Bone Health - you’ll find the links on there.
I have been having terrible dry eyes for the past 2 weeks so dry I am going thro lots of eye gel almost as soon as the drops go in my eyes are dried out again! I am now trying eye mist for the eye lids to see if this helps. Eyes I have been told are affected in many with autoimmune. I am at the point I might need to see my GP and see if he can come up with any solutions as be easier to see him than RA team!
Sorry you are suffering with this. It's a b****r isn't it? Apologies if I'm saying something you've already tried, but have you tried any of the slightly thicker ointments such as Simple Eye Ointment. This has always been the one that's worked best for me -, especially for overnight use. I'm guessing you've experimented with various eye drops? Interestingly, I've noticed a lot of the newer drops contain hyaluronic acid (I think that's it, but just realised I'm not certain)! When I've tried any containing this, although it's supposed to help, bizarrely it seems to make my eyes much more dry? Probably just me .......!🙄 At the moment I've settled on Evolve Hypromellose, but I do get the massive benefit of receiving blood serum eye drops which have been a game changer for me. A couple of things you could mention to your GP as additional treatments are Ilube eye drops (acetylcysteine) or Ikervis eye drops (Cyclosporin). Don't know if they would be appropriate, but you never know!! xx
I am just trying Optrex Actimist double action consultant said try a mist on eyelids and see if helps Been better today so I am hoping this is starting to help but who knows stand on tip toe point east and see what works comes to mind!!
I quite like Optrex actimist - my optician rolled her eyes when I said I was finding that quite good and suggested one of the other preservative free eye drops.
When I first used Actimist (years ago when it first came out) I didn’t like it at all because I felt as if it smelled of chip fat which I really didn’t like but the stuff I’m using now doesn’t appear to smell. Plus it seems to work well.
Over the years I’ve tried every single preservative free eye drop on the market. So as well as using Actimist I’m also using one called Artelac that I bought in Boots - I’ve got their day drops and night time ones as well and I’d definitely recommend them.
I also take these Vegan Omega 3 - Algae Oil, 90 Small Capsules (250mg DHA/Capsule), 3 Month Supply - Sustainable Alternative to Fish Oil from Amazon.
I didn’t buy them for my dry eyes - got them for my bones - but I discovered that when I ran out and didn’t replace them for a while my eyes started to get really dry again and when I started taking them again my eyes improved.
I’ve had that in the past. I find I am fine with things for ages then they stop working so well - which is why I’ve tried so many over the years. One rheumatologist even told me to try one called SnoTears which is a really old fashioned one - don’t think it is even preservative free. In the end I tried it - it was ok but not for long. Dry eyes are a total pain!
I remember trying Sno tears years ago as there didn’t used to be very much choice. They did have preservatives - but pretty well all of them did then. It wasn’t any good for me either! I think another one used back then was something called Tears Naturale or Naturelle (can’t quite remember)! Don’t know if it’s still around, but if so, I wouldn’t bother!!🙄 The one I settled on, and have used most of the time (since about 1990) is called BJ6. No-one seems to have heard of it nowadays, and most (younger) eye doctors have never come across it and look at me like I’m mad when I say the name! A company called BCM owns the licence and makes it nowadays, and very helpfully makes it up preservative free too. When I can’t get hold of it i use Evolve Hypromellose. Amazing isn’t it, how differently we all react to certain drops? It’s really tricky recommending any as it’s so personal. Can also be very expensive trial and error if you don’t get them on prescription!!
Yes, the rheumy who recommended the SnoTears was the only rheumatologist I’ve ever seen more than once. I couldn’t find the drops and as I knew they were very old fashioned and I didn’t think they were preservative free I didn’t bother with them, unfortunately next time I saw him he talked about them again so I felt I had to show willing and get them. Eventually when I made an effort I got them online. Turns out they are made by Bausch & Lomb - a well known company and the drops are really cheap
I think they are very old fashioned though and a bit like your BJ6 no one had ever heard of them either. My husband is a retired optician so for years I ran on rep’s samples which is why I’ve been able to try almost every eye drop known to mankind - apart from your BJ6 . Unfortunately I have to buy my own now and yes they are expensive. 😊
For a start, I can't believe you've only ever seen one Rheumatologist more than once! That sounds quite shocking. How many years have you had RA?
So typical isn't it, that the one time you don't take their advice and try something, it's the one time they remember and you get caught out!!🙄
I didn't know Bausch & Lomb made those drops. You wouldn't think there was much of a market for those nowadays. Probably just a few old diehards like me with the BJ6 - haha!! Having said that though, the head cornea doc at Moorfields I saw for many years always rated them as they contained a particular ingredient that the cornea apparently 'likes' that other drops don't (?) Plus, he knew the guy who invented/formulated them. He was another doc at Moorfields. He said they're called BJ6 as BJ was the docs initials, and the 6 was for the fact these were his 6th (and successful) formulation. Funny the things they tell you sometimes!!,
That's excellent that you were able to make the most of free samples for so long. A very useful occupation for your husband to be in! Perhaps you'll have to send him back to work a couple of days a week to get those freebies rolling in again.😄 (Only joking, of course). I do at least manage to get mine on prescription though which is a godsend as I have 20 bottles of BJ6 and 10 bottles of Evolve at a time. Each bottle only lasts me about 48 hours or so. I'd be bankrupt if I hadto buy them!! 😳😳
Wow! That is a lot of eye drops. You really would be bankrupt if you were having to buy those all the time.
Your eyes must be unbelievably dry. Mine have always been a bit dry but got worse when I had Graves’ disease. I didn’t have thyroid eye disease but my muscles were all to pot, my vision was blurred, I had double vision but vertically - when the credits ran on the tv I had two lots one above the other. Fortunately it’s mostly ok now, most of the time.
I’ve had sero negative inflammatory arthritis since about 2015. I’d just sorted out Graves’ disease then that came along. Those autoimmune conditions do live to invite their friends to the party.
I know - so funny. I couldn’t believe it when I went back and actually saw the same person again! I felt embarrassed when he mentioned the SnowTears again and decided to make the effort and find them, couldn’t risk seeing him a third time. My other half tracked them down for me - he wasn’t impressed with them, but he humoured me. He said they were very old fashioned and were pva - which they are - hopefully not quite the same as the pva glue.🤣
I attend a big teaching hospital and I’ve never even met my actual named consultant in all the time I’ve been going there. I only normally go once a year maybe a bit longer gap and this year there was a two year gap because of covid. I get my own OCT eye scans done before I go and take a print out with me. I’ve been told that I’m in remission although I’ve only ever had bloods done and x-rays on my hands once in all that time. I suppose I’m not in masses of pain so I probably am.
Sorry you've got RA and Graves' disease. Is Graves a particular form of thyroid disease? (Sorry, showing my ignorance). It's definitely true that these autoimmune conditions like to hunt in packs - grrrr!!,
It's horrible when you're caught out by a doctor like that! Did you feel like a naughty child?😁 Very handy having your own live-in expert other half! I expect his knowledge is very helpful. I don't know what the PVA additive is, but as you say, conjures up images of glue!!
Your double vision issues sound horrible. Very disconcerting. Thankfully I haven't experienced anything like that. Has it settled on it's own, or did you have specific treatment?
Very good idea to get your own scans done and take them with you, but a shame its hadto come to that.
I'm assuming it must be a very big hospital you attend. It's a real shame you don't have any ongoing relationship with a doc you know. Hope you have your bloods checked every so often and your treatment is at least monitored?
Yes, unfortunately my eyes are very dry. I have to use drops on average every 10-15 mins. (Sometimes a bit more/less). I've always got a bottle of drops clutched in my little paw, or about my person! That's apart from all the times I put them down and forget where! Then the cry goes up, and me and hubby have to start searching and re-tracing my trail around the house. Life on the edge, eh? Such fun!!😉😁
Yes Graves is autoimmune over active thyroid with antibodies. Not nice at all. The only good thing was that I lost masses of weight and although I felt dreadful I actually looked really good.Alas we don’t have a relationship with any doctor at the moment. Our previous GP surgery was sold and all of the medical staff left - even the one they said would stay so after 35 years with our old surgery we had such big problems with the new people that we moved surgery. We don’t have much contact with them other than they organise my repeat prescriptions, vaccinations but their door is always open and you are allowed to go in and speak to the receptionists which makes a change.
I’m like you I have eye drops in every pocket and bag - if by any chance I didn’t have them with my I used to buy something cheap and not preservative free to use until I got home - anything sterile and wet. Have ti say though that the algae oil seems to have made a huge difference to my eyes. I’ve been using it for quite about 18 months now. 😊
Thanks for that response. Apologies about my delayed reply!
Yep, the Graves disease sounds pretty unpleasant too (aren't they always)? I have briefly looked it up. Not the best way to lose weight either! I don't know if that means the weight goes back on if the condition stabilises.
That's shocking about your previous gp surgery. I have heard of this sort of thing happening in some practices and it seems they get sold off, and sort of taken over by groups of locum GP's or some kind of private concern? It's happened to one locally that some family members are with. The service was never very good, but now it's absolutely atrocious. Shocking. Thankfully, the surgery we have always been with has always been very good and remained open throughout the pandemic. I hope to goodness it never changes🤞🤞
I've hadto do that before when out - desperately buy anything as you've forgotten/lost the drops. Now I have my current drops, and a backup long-lasting one in my handbag - unopened unless there's an emergency! How long before I start carrying around a back-up for my emergency back-up!! Makes your head spin!🤪😆
Not heard of the algae oil. Thanks for the tip, I'll have to look it up. X😊
Hi Fruitandnutcase,The vegan algae oil sounds like it’s worth adding to my supplements regime - I had a look on Amazon but there are several- is it the one made by Nu Nutrition? Thanks!
Hi, no I get the Ekopura ones - they come in a brown paper looking sachet with a blue label. Just noticed they say they are ‘small’, I’m not sure they are , well not compared to my vitamin D capsules they are small on the other hand they aren’t all that massive.
Hope they work for you - I’ve been taking them for a long time when I didn’t reorder in time and had a break - that’s when my eyes got dry symptoms again so I wouldn’t expect instant results - like everything else it’s probably a long slog but good luck with them 😊
Yes originally started from going to hydrotherapy x2 times.I never swim now.I have this happen if my RA is not controlled.They have doubled my dose of Lefluamide and I still take methotrexate.
The consultant at the hospital put plugs in my tear ducts,not painful procedure and this has help keep my eyes lubricanted.
Along with Thealoz duo and Xailin gel for night.
We have an optician in my town who has emergency eye checks on NHS and keeps an eye on my eyes & refers me to Lancaster hospital eye dept. Urgently if required.
Hi Cal48,I hope your plug replacement went as planned. Did you mean you had dry eyes when your ra wasn’t well controlled or that you developed ulcers? I wasn’t sure which problem you were referring to in your comment. Just wanting to make sure as, if the medication you mention helps to keep your problem under control, it might be worth mentioning it to my rheumatologist when I see her in a couple of weeks. Thanks!
why the eye ulcers from RA? My eyes get so dried out too but I struggle to see. I turn 60 this week. Taking Leflunomide too, 10mg that does not seem to work
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Me and my dry eyes again
Eyes
eyes- optician unable to correct my vision so all images (close and far) are blurry
This is my eye this morning!
