hi!
I have really bad dry eyes due to my RA I’ve tried lots of over the counter eye drops but nothing seems to work..I’ve recently mentioned it to my RA consultant and he’s prescribing some strong drops!has anyone else been prescribed good eye drops off their consultant that actually works better than the over counter ones if so what is it called?
Thanks 😊
Hi there
Sorry to hear you are having problems with dry eyes. I have had this issue for many years, and for me it has led to severe (but fortunately very rare) complications. I'm under the care of an external disease corneal ophthalmologist at Moorfields, and another ophthalmologist locally in the Midlands. I have tried endless drops and regimes. I've also had a number of attempts at punctal plugs which didn't work for me, but are worth trying as can be very good if they do. Regarding artificial tears - which is what I presume you've been trying, there are only certain ones docs can prescribe (cost), most of which I think can be bought anyway. As such, I'm thinking he doesn't mean another variation of those. As well as drops there are also gel preparations which you can use anytime, and ointments which are mainly for use at night. I don't know if you've tried any of these? Again, there are a small selection docs can prescribe, but they can also be bought OTC. If he's talking about something "stronger" but hasn't specified what, there is a drop called Ilube (Acetylcycsteine) that specialists can prescribe which can help. I've used this on and off (currently on) for just over 30 years. The other drop that comes to mind is Ikervis (Cyclosporin). Some find it difficult to tolerate, others have no problem. If it suits you, it can work very well. Takes a good 6 weeks to reach full benefits. Unfortunately my eyes are very sensitive and although I've tried it a number of times, I just can't tolerate it. Years ago before the drops, it was only available off label as a veterinary ointment! I have, however, taken Cyclosporin orally for 30 years, so thankfully that's helped control my inflammation. Finally, I've been prescribed something called blood serum eye drops for about 6 years now, via Moorfields. They have to come from NHS transplant and tissue service in Liverpool and you can either have them made from blood you donate or donor blood. I think they are quite expensive and I believe (could be wrong) they are used for the most severe cases, and therefore the eligibility criteria is quite strict. For me it was a when all else had failed option. I believe these can only be prescribed by ophthalmologists (don't know if certain opthalmologists/eye units only, or any). They have worked well for me although not a cure - just another way to manage it.
I really hope this info may be useful. I hope it shows there are a number of options open to you, and there's a very good chance a mixture of a lubricant drop, night time ointment, with maybe some ilube or ikervis could prove very helpful. It's not uncommon to use a mixture like that. I've used various combinations over the years. Just try to ensure anything you try is preservative free as far as possible. Perhaps your rheumy may consider a referral to an ophthalmologist at some point (if ever necessary for some more expert advice).
Hope you get some relief!
Best wishes😊
I have had very dry eyes for as long as I can remember.
The best I got was that one consultant wrote to my GP Sjorgens??? I haven’t though. My husband was my optometrist although he is retired now
My dry eyes are nothing like as bad as Kags1068 because I can manage them with preservative free eye drops Theolose Duom Hyabak, HycoSan - all the usual good quality ones but I find that I have to rotate them after a while with the occasional help from an eye bag or hot wet face flannel held over them , Blephawipes , the gunky greasy ones for nighttime and I’ve taken these Omega 3 capsules for the last few years
ekopura.com/en-gb/collectio...
I originally took them for my osteoporosis then I realised when I ran out and didn’t reorder that my dry eyes were much worse, when I looked on the packet again they are recommended for brain and eyes so I’m back to making sure I don’t run out.
I’ve heard some people don’t like Omega 3 DHA but I’ve not had any problems and I’ve not actually read anything that says not to take them.
The other thing I’ve found with regular dry eye drops (not what Kags uses - they are very specialised) is that at certain times you almost have to almost overdose with them. They are definitely not something you only put in two or three times a day. have bottles of them in all my pockets as well as by the bed and on the table where I have breakfast.
Unfortunately things are good I’m afraid I tend to gradually use them less and less which isn’t a good thing to do.
Have you thought of asking to be referred to an ophthalmologist- I’m sure your optician could do that if your rheumy won’t or can’t.
My eye drops were prescribed by my local eye hospital and are Hylo forte drops.These are over the counter available as well and work reasonably well for me.I was also prescribed Xailin night gel which I have found invaluable.I use it before bed and it lubricates well over night.They are both preservative free so can continue to use for as long as needed.I have never seen the Xailin for sale OTC.
Hi thereYes, you can get the xailin ointment, xailin gel or xailin drops OTC. They are all available on Amazon 😊
Thank you for the info,I had forgotten to look at Amazon.
Haha! Too many places to look nowadays!🙄 I'm not normally so up on these things (honest), it's only because in the past week or so I've been reminding myself what can be prescribed, and what else is available OTC to see what I haven't tried yet! I'll have completely forgotten it all again in a few days!! 😁😁
I'm glad the Xailin is working for you. Massive bonus that they are ones you can get prescribed.
Best wishes😊
I got sent to ophthalmologist as eyes so dry and they put me on Xailin and been best thing ever one for day time and a thicker one for night time.
I’ve been prescribed HyloTear they work well for me.
I have similar issues and was referred to opthalmology at the hospital. I have had various things prescribed but although things have not been cured I am happy that my eyes are being checked by a specialist
Just as others have said but ask for referral to opthalmology. They have other things they can offer you such as punctal plugs, immunosuppressing eye drops and the correct use of eye heat masks.
Hey. I’ve had RA since i was 21. It’s also brought on serious eye complications. (Glaucoma, plus i also get an eye condition called Iritis). I’ve been under Moorfields for 30yrs. I’ve had millions of steroid eye drops over the yrs. Steroid injections in the eyes. My vision was really deteriorating. So i had lens implants injected into my eyes. 2 cataracts removed. Plus other eye procedures. I’m now 53. Since i’ve been going through the menopause. (The past 7 yrs). My dry eyes, plus dry mouth have been getting worse. I find the simplest thing like having eye scans, tests very frustrating. I hate it when they say, don’t blink!! My eyes feel they’re full of sand. I wake up feeling about 90. My dry symptoms are really awful. They looked into whether i have Sjogren’s twice. But thankfully came back negative. I have been prescribed fake tears. (Hylo?) Plus i have a gel at night. I’m a tiny bit nervous using them all the time. Incase my eye condition flares. I was just being nosy. (Are you menopausing? That can really make things worse). Have u been tested for Sjogren’s? My rheumatologist said it’s something you don’t want on top of everything else. Good luck. I know how frustrating it can be. X
Hi Vixen 2Have you ever been offered tnf blockers for your Iritis. I started with it 32 years ago and could never get off the predforte eye drops. So I took 25mg of methotrexate and it worked for 20 years thought I was cured but came back in 2020 so I was prescribed Amgevita which worked for a few years. It too has stopped working so going to try infliximab in the new year as an infusion fingers crossed this does the trick as Iritis is a horrible thing. I also have had many procedures on my eyes including cataract removal .Good luck on your journey.
Hi Bhlen. Iritis is very painful & frustrating. I agree. It often comes on when i’m rundown or i’m going through an emotional time. I had a bad flare the day after my lovely mum died. All that crying would do it! The Moorf staff were so sweet. Rushed me through. I was in & out in 20 mins!!! Rather than the usual 3/4 hrs!! I’ve actually been having a 6 weekly Infliximab Infusion for the last 20yrs. It’s meant to help the joints & the eyes. I know it defo works. As i can hardly walk without it! I asked one of the Opthalmologists if the menop can affect Iritis. They actually think Iritis is less common in menop women. (Although i still get regular flares). Anyway. Good luck with everything & as everyone has said on here. This forum’s great. You can come on here. Day or night & just ‘vent your spleen’. (I love that expression!) x
Thank you for your reply. Do you still get regular flare ups of Iritis even on Infliximab. Have they not offered you anything else ? I was on Amgevita and that stopped working for my eyes but joints settled next step is Infliximab infusion if they don't work I am sure they would offer me something else. I have sero-negative RA but my joints are settled at the moment but not my eyes. They want to get on top of my Iritis so I can get off the predforte eye drops.Good luck.
Hi thanks for your reply!
I too have stereo positive Rheumatoid Arthritis that’s very aggressive I’m currently taking 15 mg of Metratreoate and 40 mg of a Biologic as I fitted the criteria to get it..I’m 49 years old and haven’t had a period for a year and half I’ve been to see the doctor about this and had bloods to confirm I’m post menopausal..do you find this adds to the mix ? 😊
Hey again. Yes. I bloody do. So bloody annoying. But Moorfields Eye Hospital’s great. Lovely, kind staff. I’m on HRT. Really has helped with the awful mood swings. (My libido was never affected!!) My partner & i are happy that way… 🤭 But i was a bit of a ‘bully’ to him. I was a total, emotional rollercoaster. I actually started the perimenop when my lovely mum died 7 yrs ago. Sometimes i can hardly open my eyes. Plus my mouth’s so dry. They say cheese can be good. Because often our mouths start watering when we eat some. Maybe even if we think of cheese, it’s an automatic thing. Say cheese!!! 🧀 x
I have had my tear ducts cauterised and it has helped. i do still get some dry eyes and i do use drops Thealoz duo and they help me. xxxx
optician told me to buy Optase moist heat mask. Warm in microwave and wear for 5 mins. It really does lubricate the eyes. Not too expensive.
I use Hylo Forte eyes drops daytime and Hylo forte gel at nights very good and easy to use awful having dry eyes hope you get something that works for you .
Goodness, looking at all the drops and gels and ointments everyone has mentioned - I’ve tried the lot - apart from Kags special ones. They aren’t cheap either and one evening I had the bright idea to get the train from the station round the corner to go to the lying in state when the Queen died.
We queued for hours and all went well until I eventually had my bag checked - guess what? Two brand new, one of them unused, bottles of eye drops that I had just bought were confiscated and were thrown in a bin😱😱😱 I asked but there was absolutely chance of even coming back to get them - I had paid about £14 for each of them. So mean.
Good grief - that sounds like rather over zealous confiscation!!😵💫😊 Can't imagine what they thought you would do armed with artificial tears!😅
Like you, I've tried all those mentioned, plus a fair few more.🙄 With the artificial tears it's unfortunately a case of trial and error as to what what suits and works for you, isn't it? Can be a bloomin' expensive process, though! My local consultant is a fan of thealoz duo, but they (and it seems any containing Hyaluronic acid), irritate and make my eyes even more dry. I have to stick to good old hypromellose based drops. I've been using Tear Lac for a while, and they've been the best recently. I used to use something called Simple eye ointment at night (for over 25 years), and it was the best I've ever used. Your husband may have heard of it. Really thick soft paraffin based ointment. Suddenly disappeared off the market just over a year ago. After trying several I've been using xailin night ointment for a while which is ok for me, but nowhere near as effective as the simple. Still, at least it's available on prescription which is a godsend as I get through a tube about every 5-6 days.🙄
It's a good point you made about the regular usage too. If the eyes are very dry, you have to keep putting in the drops constantly so as the eye surface doesn't dry out which can risk dry patches develop on the cornea. I use the tear lac every 10-15 mins on average, serum drops every 30 (when in home as you can't really take them out and about), Ilube 3-4 times, xailin ointment 2-3 times, plus prophylactic antibiotic and 2 different glaucoma drops. Plus, the good old heated eye mask, blephagel, wipes or whatever! It's a bloomin' full time job😁 (To be fair my husband has to do some of them). Feel like I spend all day either using drops etc or taking pills!🤪 Still, keeps me off the streets.........😁😆
Can't you get your drops etc on prescription?
Best wishes
Husband remembers Simple eye ointment 😊 I’ve never asked the GP - or anyone else for dry eye drops, I think it might be one of those things they don’t want to prescribe. Husband used to get patients whose doctors would refuse to prescribe consultant prescribed preservative free drops! Quick phone call to consultant used to stop that but the fact they thought they could was a bit much. The thing I hate about those ointments - I use one when things get really bad - is that once you put them in you can’t see a thing. I’ve just discovered that if I lie on the tube for a little while while I’m reading it makes the ointment nice and soft so that it comes out of the tube really easily and goes where I want it to go plus I don’t need to squeeze it hard. In the past I always used whatever rep’s samples were around - which is probably why I’ve tried so many different types and it’s only since Covid when my husband retired that I’ve started buying my own. Dry eyes are just so annoying, I’ve also got things called pterygiums on both eyes, they’re not really a problem unless my eyes get really dry.
I just get fed up with them all and when things are going well I gradually stop using the drops as frequently as I should. I think it’s the Omega 3 DHA capsules that make an enormous difference for me
yyes Theolous Duo
theolouse duo are best for dry eyes, i tried lots of things, used to get them private but now get from gp
Hi
Can't really add much more to what's already been said but it might help you, if your dry eyes are caused by, for eg, MGD (meibomian gland dysfunction) to understand what's going on and the proper procedure when using heat masks to clear out the gunk from your glands.
Check out meibomian gland expression - there are some vids on You Tube.
I've been struggling with it for a few years now. Apparently, my tear film is really poor and my corneas are pitted.
I have to put in glaucoma drops and also steroid drops for uveitis every day. One of the glaucoma drops really stings. And now, as well as Hylo Forte and Xailin, I'm also on Ikervis which stings like hell too.
Beginning to wonder if the combination of drops actually makes it worse. I spend most of the day with my right eye half shut due to the irritation!
I too was about to search for help with dry eyes (really suffering this last week) so your post replies have given me many ideas. I am prescribed Hylo Forte which doesnt seem to be working well for me. I also have purchased the Eye Doctor eye mask which I heat in the microwave and massage etc. I did buy some Blink Intensive soothing eye drops which work for a short time. I cannot now bear bright lights so have bought some wraparound overglasses from Amazon and they slip easily over my normal glasses and as they have a largish side piece help considerably. As a result of replies from your post I now have a shopping list of "things" to try. Big hugs☕💐
Scleritis with RA
Dry eyes
Red eyes
Does anyone else suffer with DRY eyes and R A ?
Dry eyes 
