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Eye problems with RA?

Ever since I’ve had RA, for over 7 months now, I’ve had very irritated eyes. Always itchy, always blurry as if I have something in my eyes, and more sensitive to sunlight. I’ve actually developed a sort of squint because I’m always frowning and blinking to clear them. And suddenly have lines under my eyes from irritation.

I wondered if this was the RA or possibly the drugs I’m on, namely hydroxychloroquine, sulphasalazine and methotrexate.

It’s driving me nuts. I clean them and use moisturising drops but to no avail. Has this happened to anyone else?

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Have you heard the term "Rheumy eyes"? Red and sore, a bit runny? So I think sore eyes can be a problem. Good luck with them.

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Any solutions?

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Mainly the general RA-therapy but maybe anti-inflammatory drops? Either steroids as being fast-acting and potent or if you don't want steroids, try Sodium cromoglycate drops. They are slower acting but are a potent anti-inflammatory. They work for my hay fever but should also work with any source of inflammation.

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Hi Jules13,I get gritty and runny eyes especially in the morning, I think it's a common side effect with RA , I've also got catterats which I think is down to this disease as well

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Oh god

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Think you should get checked out for Sjorgrens syndrome. Most obvious symptoms are dry eyes .....I would describe them more as gritty.....dry mouth, can affect the digestive tract, and joints. Plus more effects.

First port of call is an ophthalmologist.

You do need to get a diagnosis asap, as your eyes can be damaged without treatment.

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They already said I had Sjorgrens but thought the RA medicine would sort it out. What else can they do?

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Jules, doc should have referred you to an opthalmologist once you started hydroxychloroquine. There are specific eye tests they do bc hydroxychloroquine can do real damage to the eyes and so need to go get checked every 3 months. How long have you been taking it?

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The specsavers optician was excellent with me. She gave me an eye test, and lots of other tests too, retinal scan and examined my eyes for scratches, of which I did have one. All free. For convienance sake I bought eye drops then and there from the shop, but she wrote to my GP suggesting the drops and overnight eye cream that would suit me. I now get these in prescription. I need to use the drops around 4 times a day to keep my eyes comfortable, but a huge improvement. She organised a return visit for me to check the scratch which has fully healed.

So worthwhile putting an appointment on with the optician, you will get seen within a few days, remember to let them know you are on DMARDs.

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I have seen an optician twice and they said apart from eye drops there was nothing they could do. Oh.

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See if your Rheumy Dr. can refer you to an eye specialist,mine did he said my eyes have been damaged a bit by the Sjogrens,gave me better drops and eye cream and I go back to see him in 3 months,hope you get sorted x

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Yes, get eyes checked. Presumably you did have one when you started hydroxy?

I find that I have to use eye drops all the time now, and city pollution drives me nuts. I also find that a hot flannel over my eyes at night helps dissolve gunk (apparently you can get teeny crystals building up at base of eyelashes). Also need sunglasses a lot as v sensitive to light. It sucks, like quite a bit else with RA.....

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Have had two eye checks. They said nothing they could do but hydrating eye drops bought over the counter.

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Try the hot flannels for a week/10 days to see if that helps? The second optician I went to told me about my micro-crystals and although I was sceptical it has helped. After a blitz for about 2 weeks I now do it maybe once a week.

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I do hot flannel every morning and evening. Very soothing. Don’t have any build up in eyes, just feel like they’ve got dust in the whole time. I look soooo old. Got wrinkles I never had!!

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Yes, that was what I was told as well.

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I was wondering yesterday how you were doing Jules. Anyway, you're describing the symptoms I had on my first DMARD hydroxychloroquine, just the same. At the time I wore contact lenses & despite my Optimetrist brother-in-law sending me each one of the different comfort drops his Opticians supplied I had to give them up in the end. Fortunately it was whilst I was living in Spain so I didn't look out of place wearing sunglasses basically all year round. I persevered because HCQ was working but around a year in it started to be less effective, MTX was added & once that took over the HCQ was stopped, lo & behold my eyes became better.

Definitely mention it to your Rheumy, it seems too close for it not to be the same symptoms as mine. My Consultant ensured once I'd started with the troubles I had my eyes tested every 3 months by the hospital Opthalmologist, which was only 2 visits at it worked out but my eyesight hadn't been affected which was the main thing. He recommended I stopped wearing my lenses which I basically had except for evenings out, being the designated driver I needed them for driving, because I'd worn lenses so long my normal specs prescription was off at that time, shh, don't tell the police, by law you have to keep a correct prescription pair in the car. 😳

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Methotrexate hasn’t helped at all with the eyes.

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Sorry, don't follow.

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Sorry I meant that they won’t reduce my hydroxychloroquine even though I’m in methotrexate which is working. She said she would keep me in my triple therapy for at least 12 months.

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Hi jules13,

I was on hydroxychloroquine and it caused blurry , l can still see but I was unable to focus clearly and my Ophthalmologist ask me to get off because I wasn’t a good long term candidate for it and now I am on methotrexate and I have Sjorgrens , dry eyes, dry mouth , my ophthalmologist put plug( not sure the proper word for it) in my eyes-tear ducts , and on lotemax and stasis to see it help with the dry eyes but again I have blurry eyes again..,so not sure it causes just from just having RA , will see the ophthalmologist again until April. Have your eyes check if you have yet..,,

I hope this help ..,

Jen

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They said my eyes were fine as far as they could tell. Just said to buy eye drops. Boo.

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My eyes are the same. Optician diagnosed Blepharitis (Dry eye) I've been using Optrex actimist which has definitely helped. It's not available on prescription and isn't cheap but worth it. It's £15 in some chemists but I found it in Savers for £9.99.

Hope this helps

Paul

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Yes I have that too. They gave me a solution I wash my eyes with but doesn’t help the blurring and itching. Will dry the Optrex stuff. Thanks.

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Hi Jules

I've had gritty/dry/sore eyes from day 1 and the RA meds have never eased it. I was prescribed and have used Hypromellose eye drops ever since. I use them every morning an throughout the day when needed.

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Will give it a try. Thanks. X

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You should be able to get it on a prescription as its a side effect of your condition.

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Hi Jules, my rheumy told me its one of many symptoms that are linked. My eyes are very dry, I use drops, then lacrilube (preservative free only) before I go to sleep as it's very thick, heat pad before I go to bed as it gets worse at night, this is supposed to release any oils in your eyes. Unfortunately my eyes still have to be prised open every morning, so can't really say they are working. Another little thing we have to put up with. I had this long before I was put on any drugs. I can't blame the drugs apart from the start of a cataract which my optician thinks being on steriods for a long time may have caused. Xx

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Thanks so much will give it a try. X

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Yes, I have problems with my eyes as well. I take Methotrexate 25mg/0.4ml once weekly,

but I started this a few years ago with a combination of hydroxychloroquine .

Since I complained to the rheumatologist of dizzyness, blurry vision and light sensitivity,

he took me of the hydroxychloroquine a year ago. All the symptoms above are still present,

but I was told by the pharmacist that it takes up to four years for the hydroxychloroquine

to leave the body. So, it appears that we just have to cope and live with all the side effects

as well as we can. By the way, my RA symptoms are doing very well on the methotrexate

alone.

All the best,

Zusje

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4 years!!!! How long were you on it?

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About two years or so.

zusje

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Yes, understand the feeling. They feel gritty sometimes. Dry eyes is quite common. Good that you are using the drops. My eyes improved when I got on top of the inflammation in my bloods from rheumatoid or at the least that is what an ophthalmologist said. He asked one time was I feeling better with my condition as my eyes seemed less inflamed, so maybe over time with your treatment they will improve somewhat.

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Hope so x

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Yes I have the same, in my case long before I started on the drugs so defo not caused by those but likely associated with RA.

Several corneal ulcers later and blepharitis was diagnosed and a strict self care regime has at least prevented any more ulcers in the last year.

Wet heat morning and night helps with the itchy gritty feeling. I use large cotton pads in hot water over the eyes, then gentle massage and finish with a clean along the lashes with very diluted baby shampoo.

Still miss wearing my lenses and wary of using eye make up too....little things but miss being able to make that choice.

Best of luck x

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I do use a blepharitus solution with a cotton bud morning and night. It’s just the rest of the day!! Ugh.

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Have had dry eyes for many years with the RA. In my experience I use the hypromellose drops at night as the cream based eye preparations caused me to have light sensitivity and infections due to drawing dust etc.

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Hi it can be effects of the tablets let your RA team know you are getting this effect and make sure you have an eye test . It’s so annoying I know how you feel. The options are normally great and when they know you have RA will make sure they look after you. Don’t just put up with it your eyes are too important.

Good luck let us know how you get on,

Pam x

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I will. Thanks Pam.

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Hi Jules

Sory to hear about your troubles. If your eyes are giving you so much difficulty it's so worth getting a second opinion. I'm not sure what country you live in but in the UK I went to a Specsavers branded store and the optometrist did something called a BUT test using a painless dye. It helped look for damage and tested for dryness, by testing evaporation rate. Normal is around 9-10 seconds, mine were 2-3.

The bonkers thing is that, from what I can gather most Rheumys focus upon Joint pain and inflammation. But these other symptoms despite being real and debilitating seem to get sidelined. In the UK there is a specialist Sjogren's syndrome organisation BSSA that's extremely helpful with advice for these dryness related issues. You might Google them their website is an invaluable resource. And their helpline is exceptional. They have Sjogren's specialist's supporting them.

Sincerely hope you find something that works to ease things for you soon.

Best Regards

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Thanks so much.

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Hi after reading down all your answers I think you need to talk to your consultant and insist you get to the bottom of what’s causing it . They may need to change one of the combinations of the drugs . You may have to get tough with them as your eyes are so important don’t leave it ,

Pam x

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It's the hydroxychloquine. I have just come off then for the same reason. Rheumy said they are mild and could still be ok onmethitrexate and benepali. Opticians don't like you on this drug as known to affect eyes. Ladyjan

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Ok. Will talk to them again but she said she wouldn’t take me off hydroxychloroquine or sulfasalazine for 12 months. Not sure why. I was on them for 4 months before methotrexate and they did nothing.

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Just found a good web site on eye that can effect our condition it’s BSSA it’s worth a look x

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I have the same symptoms but don’t take hydroxy. I currently take 20 mg Methotrexate and 10 - 20 mg Prednisolone. My RA isn’t yet controlled but I notice my eyes get worse when the pain does. Optician said I have 20/20 vision despite sometimes being so blurred I can’t see the TV. He said Dry eyes were linked to the condition as did my Rheumatologist. Neither offered a particularly good solution, just to use drops until the disease is controlled. I use a preservative free one from the optician called Theolose Duo. I find this is the best one I’ve tried. Maybe give it a go? Hope you find a solution soon x

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Thanks so much.

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If you have sjogrens as i do and you live in the UK , ask for an appointment at Moorfields hospital, where they specialise in occular health. I am on methotrexate and have been for years. Four years ago I had Chemo for breast cancer and when I finished treatment I started to experience dry eyes. This got worse and worse as the months passed and I eventually saw a specialist at moorfeilds. They gave me every moisturising drop under the sun and nothing changed what was happening to me. I felt like I was losing my sight as I could see nothing clearly, very blurred vision. Eventually they suggested cyclosporin, which at first I had to buy abroad (in turkey or the states) but is now prescribed on the nhs. It is a steroid eye drop and although I still have problems with my eyes, it has been a life changer for me.

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I went to Moorfields about 2 years ago because of a dot on my eye. They said I had blepharitus so I do use the solution for that. But since the RA it’s so much worse.

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Good post Jules13 and thank you, your question has been helpful for me too. Some interesting responses. I've had dry itchy eyes, since 1980's around the time I started with thyroid problems too. Started as conjunctivitis and developed into ulcers, always in the left eye, even though both get dry and itchy. It eventually 'burns' itself out, usually after some months and various prescription drops/gels etc. Have often thought it was Sjogrens as get the really dry mouth overnight, when the eyes flare, too. But told not - 'blood tests say's no' (As a thyroid patient I'm well aware of how blood testing can be futile/inadequate)

Numerous flare ups have left my eye scared and my eyesight increasingly blurry.

Last year I had a greater problem, the ulcer did not develop this time, but my eyesight changed for the worse 3 times in about 2 months, The Dr at the eye hospital referred me to the consultant for further investigation, the referral was refused and I have not been able to get a reason why. Now need verifocals rather than just reading glasses. And eyes never feel right, My vision is impaired.

Since the very first episode I have problems in any increase in brightness, I need sunglasses all the time because the glare, I remember walking through town one Sat afternoon holding my mother's arm, with sunglasses on, in the rain.

After about 20 year's of uncertainty of what the cause was, they said it was likely to be 'Herpes simplex' - cold sore virus. They told me it would not be TED as I was Hypo not Hyper active thyroid. And hence that is what they put it down to - I'm not convinced. I now know that 10% of TED is now thought to be linked to Hypo. Also my sis had Graves. I've also had my DNA and find Graves more prominent than Hypo. (From what I have been given)

I know these flare ups are not my thyroid but am unable to pin point the exact cause. I rarely go to the GP these days, since getting my meds sorted (on T3 for last 8 yrs) But bit the bullet this week as having lasting pain leg, need to get to cause. They are referring me to Rheumatology. There have been signs of RA/sjogrens or poss Lupus, or such for years, 'blown' knuckles etc. But again 'bloods say no'. Little Britain eat your heart out!

I'm telling you all this in the hope that you see that your eyes need looking into in depth, find the cause as quickly as you can. The longer it goes on the cloudier the situation and the harder to pin point the caused and get the right treatment. Medicine, RA or some other AI.

I hope you get to the bottom of it and quickly.

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Oh poor you. Yes I will talk to my Rheumy again. X

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One of the very clued up Lupus people mentioned about a year ago that hot tea bags 3 times a day help a lot. So same concept has a hot flannel. But the trick was to do it 3 times a day and that keeps the ducts open and thus reduces the dryness.

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Doesn’t the tea stain your eyes?

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She did not say that it was an issue. She just said it worked for her.

I am always keen on the simple tricks to sort RA issues/RA drug side effects out.

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I remember my mother doing cod tea, or tea bags for stys or other eye problems. It does seem to work. But three times a day is fine if you are home with nothing to do...walking around town etc with tea bags on your eyes might draw a few funny looks.

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Yep, some of the old fashioned cures really do work.

Tee hee - yes you would get some funny looks I'm sure and I guess you would bump into a lot of things!

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I could try green tea xx

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Still think you would look funny! Watch out for lamp posts!

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They do make gel eye masks now. That might work x

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I often wonder if Rs affects the vision I get disturbed vision and aura migraine my grand mother lost her eye sight due to RA ,but no one seems to mention this as part of RA

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I used to get dreadful eye disturbances, migraine, build up over about ten years coincided with starting T4, after 20 yrs or so dropped T4 for T3 only within days all gone. The dry and itch and ulcerated eye goes on, but started around the same time as goitres etc...

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I was diagnosed with uvitis (sp?).an inflammation behind both eyes due to RA meds. Very uncomfortable. Got RXs for 2 kinds of eyedrops and it eventually cleared up. The eye clinic checks on the inflamation about every 3 to 6 months annually.

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That is half the problem, the meds you get for one thing cause more problems, before you know it no one can see the wood for the trees to see what the real problem is. Borne out of a trial and error system of treatment of systems with little regard for the cause.

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I have RA and I was referred to an ophthalmologist from a very young age to check on my eyes. I was told that fair hair and blue eyes are more affected for some reason and I have been on and off eyedrops for as long as I can remember, do a self referral if you can or if not go to GP and get them to refer you. You may have inflammation of the eye and if left untreated I think that can be very bad..

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Thanks. Will get an appointment ASAP.

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Well I have tried the hot flannel morning and night. Got some blepharitus solution which I use to clean morning and night and eye drops.

Will still see an opthamologist but already feels much better. Thanks all. X

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I have a condition in my eyes called map.dystrophy I think that’s how you spell it and I have extremely dry eyes I was told to buy online a moisturizing dry eye mask..I use twice a day you put it in the microwave for 20 seconds and leave it on for three minutes seems to really help.

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Have you tried giving up wheat and oats, I did and it's solved a lot of eye problems the doctors blamed on RA, shows they don't know

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Hmmmm that’s really interesting actually. I’ve been up in the Lake District with quite a few family members and cousins who don’t eat wheat or gluten. So I only ate a few bits of sourdough and rye bread the whole week when we happened to eat out. And now you mention it, I hardly used my eye drops at all. Wow. Thanks. X

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Glad to report the eyes are much better. Well everything is much better. The methotrexate is working. Hurrah x

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I’m having eye problems as well. I started seeing floaters in my eyes. Went to get them examined and eye doctor said nothing can be done about it, that as people age some will get these. But lately my eyes have become more irritated and red in the morning. I constantly rub my eyes all day too. It feels like something is always in my eye. I think I’m going to need another eye exam because sometimes my vision is bleary. I’m still on the methotrexate ince per week and I don’t know what’s happening but I hope to find out soon. Just changed primary physician so I’m going to have to be referred to a new rheumatologist . I really hope the new doctor doesn’t prescribe extra meds to take.

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