Hydroxychloroquine and Eyes

Hi all, I am new to this page. I have recently been diagnosed with early RA although the pain I feel seems like it is quite established! I take 400mg of Hydroxy per day. When I asked my Rheumatologist about the possible damage to the eyes with this medication, he seemed to dismiss this saying they are being over cautious and the risk to eyes is very rare. I haven't had an eye test prior to starting these meds and there has been no mention of one in the future. Should I be worried? What are your thoughts on this please?

Many thanks

35 Replies

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  • hi and welcome.

    I was diagnosed with RA two years ago and started on MTX. My doctor decided to add hydroxy so I went for an eye test first. After the first week I did get some side effects of sore eyes so I stopped taking it.

    I think everyone is different and what works for one wont suit another. Its just finding which medication works for you.

    Good Luck

    Trish x

  • Hiya Ppwogan & welcome though I'm sorry you've had need to join us here but I hope you find it a help being in contact with people who know just how it is.

    Oddly enough we've been discussing a similar situation to your question about hydroxychloroquine over the last couple of days. This link takes you to the original post & the responses. healthunlocked.com/nras/pos...

    If you have any questions that haven't been covered by Glynis's thread fire away, we'll help or give our experience where we can. :)

  • I have a huge amount of trust in my rheumy, especially as I've had great treatment from her over last 5 years. So when she told me similar, ie not to worry about Hydroxy, I believed her. She recommended that when I have annual eye tests at the opticians I make sure to tell them I'm on it, so that they can check carefully. And that's all I do and it's been fine.

    I've read quite a number of research papers specifically on the eye risk with Hydroxy as well - and they all same the same thing especially if you've been taking the normal 400mg/day does for less than 7 years. (Unless you are very small and don't weight much in which case it's a bit lower.)

    So I really hopes it helps you, like it does me, and the established pain is soon a distant memory.

  • Hi there

    I have lupus and was on hydrochlorine for five years. I am 40 but was 38 when I got a cataract and toxic retinopathy and wish that I had never taken it as my eyes are so sore and I look like a frog in the morning. I can barely see too. I can't read small print any more either.

  • Oh you poor thing, that's horrid - especially getting cataracts as well at such a young age. I hope that your cataracts can at least be removed and you get to see better.

  • Hello and welcome. I was thinking eye side effects were just a fact of taking certain RA meds. My vision sucks ow compared to how it was before being diagnosed almost a year ago. I haven't taken the meds you're referring to but The DMARD and Biologic I've taken have both had a negative effect on my eyes.

  • My first rheumy didn't tell me to get eyes checked and had me on a too high a dose for my weight/size. When I got my new rheumy 6 months later she told me to get my eyes checked even though I'd been on it for months. The eye dr said I need to get yearly checkups while on hydroxy. I said I heard that if my eyes have problems and I stop taking it I heard my eyes would improve. He said Not True. He said hydroxy does permanent retina damage. He didn't find any changes from my previous visit 3 yrs prior so feel lucky.

  • Thanks to you all for such a warm welcome :) and thanks for your advice. I wear glasses so I will mention to my optician when I next have an eye test. I am tolerating Hyroxy well, the only side effects I am suffering with is with my eyes. I find they are really itchy at times and I can no longer wear my contact lenses as it feels like I've put acid in my eyes. Has anyone experienced similar?

  • My rheumatologist was adamant that I had an eye test before I started hydroxychloroquine a) to check that my eyes were in a condition that could tolerate hydroxyquinine b) give a baseline, to compare against future annual tests, or any time I felt a change, whichever is the sooner.

    Although I now have lens implants, I am inherently extremely short-sighted (-24 !), and one eye has a Fuchs spot. So, effectively I only have mono vision. Naturally, I was very wary about this drug. I'm still on it and wouldn't hesitate to go to the eye hospital if I was aware of any change in vision. I do find that painkillers can blur my vision, but only temporarily.

    As for itchy , puffy eyes, I certainly experience that. I am prescribed Lumecare gel which I find very helpful. I think , in my case, the condition is part of RA and/ or all the drugs.

    I hope that helps. If I were you, I would definitely get checked out. J

  • Yes, I wore contacts at the time I was on HCQ (200mg twice daily) but I constantly felt as though I had grit or sand on them even though I always scrupulously cleansed, rinsed & disinfected them overnight. I tried different solutions to see if that would help but no joy. I tried continuous use of comfort drops & my b-i-l (an optometrist) even sent me a prescription only gel to see if that would ease the scratching but again that did not help. With the gel he also sent a months trial of daily disposable contact lenses, no difference. The result of overcleaning the lens holder even caused an emergency visit to Urgencias & a full fluorescein angio by an opthalmologist & I was prescribed yet more prescription gel. This was my wake up call & so I gave them up in the end. All this even though my eyes were checked as part of my treatment under guidelines for HCQ treatment at each visit to my Consultant, so every 3 months, yet I sustained no damage. I was living in a Med country at the time & virtually lived in sunglasses during the daytime which did help somewhat with the light sensitivity.

    I thought it odd my last test showed that the myopia I'd had since a teen had all but gone. Not so I was told, it's quite normal but I do now need specs for close work. Ageing & the natural change in eye shape has its advantages, especially now my improvement means I can now legally drive without my glasses!

  • Yes! My eyes got sore and scratch and I was diagnosed with Blepharitis. I was referred to an eye specialist as I also developed a Chalazion ( cyst) which needed excising. I wear Viscotears lubricating drops during the day when I feel them dry and at night Lacrilube gel . I cannot wear mascara anymore as when I do and take it off my eyes are sore. I would either go now for an eye yest ( don't wait until you are due) or ask your gp to refer you to Ophthalmology. i was on hydroxy for years I was referred to ophthalmology for eye assessment prior to starting hydroxy and annually thereafter. I wàs on it for about 15 years and never had any problems.

  • Hi Kikideelili- I too was diagnosed with Blepharitis and seem to keep it most of the time. I have noticed that my right eye seems to have gotten so much wore since on Hydroxy for near two years now. I go to my ophthalmologist about every 6 months and she does the extensive test , but other than the Blepharitis she says all looks really good. I seem to keep red irritated eyes along with it. Do you experience the same? Are you still on the hydro and are you on any other RA med. I am on the hydro along with the MTX.

    Thanks,

    Lois

  • My Rheumy said I had to have my eyes checked by an ophthalmologist before I started it. Then, every year a check up. Sooner if I had any problems with my eyes.

  • Hi Ppwogan, I'm on Hydroxy 200mg daily. When I started on them my rheumy didn't mention eye tests either but having read the leaflet on the drug I booked myself in at the opticians and told them I needed yearly tests and why. They gave me a thorough check.

    I also suffer with itchy eyes and can't tolerate contact lenses. When I tried using them the really stung and my eyes would be either really dry or streaming. I put this down to my secondary sjogrens which causes dry eyes, mouth etc. Again this is something which the rheumatologist hadn't picked up on but has since confirmed. Maybe you can get eye drops from your optician for use with the contacts? I just decided not to bother anymore as I didn't want to risk getting an infection or causing inflammation. x

  • Thanks paulywoo, I will see if the drops help. Thank you :)

  • Hi I started on hydroxychloroquine just 6 weeks ago and my rheumatologist warned me about poss damage to eyes and I should have an eye test to get a base line for them to work from and then have a test every 12 months to monitor.

    I had my eye test last week and all good which is great considering I've not had my eyes tested for about 20years!!

    I've not had any side effects from this drug - it's the MTX ive struggled with.

    id recommend you just get your eyes tested just incase plus it's nice to be told there is nothing wrong for a change!!!

    Hope you get on ok x

  • Hi Cat111- I see that you are struggling with the MTX. I have been on it for about 14 weeks and have not seen much of a change at all. I just get very tired, mild nausea although I am on the injections. She has me on 12.5mg which is a low dose, but I am wondering if I should just go off it if it is not doing any good. I am still on 400mg of the hydro as well. My right eye seems to have gotten much worse although each time seems to be fine. I go back on the 16th so I will see then.

    Thanks,

    Lois

  • Hi there, I am waiting for my rheumy to prescribe Plaquenil and went to the opticians for a check up first. He was really thorough and knew exactly why I'd been sent for an eye test. He said it harks back to the days when it was a much more potent drug and sight dimunition was a real possibility. However, the drug has been made much safer over the years. He said the number of people he has seen on the is in the hundreds and the number of people who have presented with deteriorating eyesight because of the drug was zilch.

  • I have been on hydrooxychloriquin for over 14 years, was given an eye test at first by the rheum team. Have had regular eye tests ever since. Eyes are aging as is the rest of me. my optician keeps a good eye on me. I use eye drops regularly to keep dry eyes at bay.

    I did come off hydro.... for some months, but found that the RA got slightly worse, so went back on them.

    I use hydrabac eye drops, they don't sting.

    Do ask to have regular eye tests, I am over 65 so paying is not an issue for me, and I really trust my optician. Build a good relationship with one.

    I have been told the risks are really minuscule, but that doesn't help if you are one that is affected.

    Good luck and take care of your eyes.

  • Hi, My Rhuemy gave me an Amsler Grid which I use every couple of months. You hold it 12 inches in front of you, cover each eye in turn while concentrating on the black dot in the middle. If the lines on the grid become wavy, broken, blurred or missing, they advise you to contact your Optician/Optometrist within the next week. I've been using it for around 7-8 years now with no problems.

  • According to my opthalmic practitioner the eye side effects are dramatic and unmistakable. But I still have 6 monthly checks just to be on the safe side. Who is your rheumatologist? Can you discuss your concerns with your gp maybe? Is the hydroxychloroquinine working for you? Hope you feel better soon :-)

  • Hi wishywashy

    Thanks :) Im going to make an appointment at my opticians and see where I go from there. Vision okay at the moment, it's just the burning and itching as I posted earlier. I have been on Hydroxy 200mg since November however I did feel my symptoms were worsening. I saw my Rheumatologist recently and he has doubled my dose and suggested adding mhtx depending on my blood test results. He has given me a steroid jab aswell which has helped but I don't go back to see him until May. The whole process seems to take so long :(

  • I took Hydroxy for about 18 months altogether and was told by my rheumy that this eye damage is extremely rare and risks increase after about five years and body weight should be taken into account. Like others here I suffer from dry eyes as part of my rheumatic problems - but my opthamologist was adamant that the retinal damage from Hydroxy is very distinct and unmissable and I wasn't affected at all by this.

    Unfortunately my skin was badly affected after a while and I had to come off it. If you want to read more I suggest the Lupus UK HU would be a good place to go because there are so many on there who take it as it is a first line Lupus drug - although many with RA try it too. I found it worked very well for my RA but sadly I'm extremely drug intolerant so am not taking any DMARDs presently.

  • I have discussed the risks with both an optician and an eye surgeon and both have assured me that eye damage is extremely rare. As long as you have annual eye checks and get anything you notice checked out immediately you should be fine.

  • Hi I was give hydroxy in September 2014 and started the dose. The Rheumatologist tol me to have regular eye tests. After a few weeks I had the increase the dose and 5 weeks later I had 3 tears in my retina. The eye consultant said it was not caused by Hydroxy but I am suspicious as it happend straight after the increase in dose.

    I now on on MTX and suffering quietly. I have to be careful with all drugs as I also have CML chronic myeloid leukeamia.

  • Stevenxx

    I was diagnosed not long after you. It seems by looking at other posts on here that it takes a while to get it under control. I hope youre not suffering too much with mxt and I do hope you feel a bit better soon. Good luck 😊

  • Hi Ppwogan, I have a yearly eye test with an opthamalogist to check my eyes in addition to my optometrist because of this med. Everything has been fine, but this was something my rheumatologist, optometrist, and GP recommended since I was approaching the 5 year mark on the med. Everyone is different but preventative care is a good thing. So far my tests have been normal. Hope this helps.

  • My Rheumatologist is of the same opinion as yours. I've been on HCQ for over 5 years.

  • Ppwogan, it does seem from your replies that your Rheumy didn't explain much about RD & associated treatments, particularly that the ones we need in an effort to control the disease can take some time to build up in our system before we start to feel real benefit. Did he give you an information pack or any leaflets for options on DMARDs at your first appointment? If not, maybe a good look through the NRAS website nras.org.uk. would help you understand all about the disease, treatments etc., even personal views of living with the disease, I would think that could be extremely helpful for you just now.

    The NRAS helpline is also an option if ever you feel the need to speak to someone freephone 0800 298 7650

  • Hi nomoreheels

    He gave me very little info at all. I basically have been told this is what you have, this is what you need to take and that's all! There were no other options except Hydroxy. Thanks for the links above and I am finding this page very useful.

    Best wishes

  • It was beginning to seem as though that was the case. Sometimes some Rheumy's need to take a step back from their day in day out routine & think that to the newly diagnosed it's a huge challenge, & lifestyle change, when first diagnosed with a chronic disease. It's most unfair to expect you to just accept you've got this disease, go away armed with specialist meds with little clue why & what the aims are with his treatment for you.

    I was fortunate that my first Consultant & consequent ones were most understanding & preferred their patients to be proactive gave me all the time I needed plus lists of reputable websites to do my homework (because my first one soon gathered I knew nothing & was hungry to understand what I had!) & through that I learned loads. I'm still learning through being on here, how other autoimmune conditions are often interconnected though thankfully I only have RD & OA but as they say knowledge is power!! I hope you gather lots of info from the NRAS website & if any questions arise or if there's anything you're unsure of you know where we are, someone will be able to answer you or share their experience! x :)

  • Thank you 😊

  • I am on this also,however I was told that I should see my optician, and let them know of the change in prescription. I was also told that regular check ups are important.

    I go annually anyway because of family related optical probs

  • My mum got macular degeneration from hydroxychloroquine, but she started taking it probably 40 years ago, and in those days they used to use it in a different way - very much higher doses from the start to try and knock the disease quickly. Now the protocol is completely different - much lower doses than Mum had, and recognition that it is a DMARD and will work effectively at lower doses but after a much longer and slower build up . At those high doses that Mum had, macular degeneration was a much higher risk, but even so it did take quite some time for her to show symptoms. Unfortunately she let it go on (without going to see an opthalmologist) for too long - mostly because she knew that she had tried all other available meds (biologics weren't available then) and that was her last hope. She also didn't realise the damage was irreversible and wasn't seeing a rheumatologist regularly.

    What I am saying is, that with todays much lower doses, macular degeneration is far less likely, but if you want to avoid hydroxy doing any damage, make sure you go for an eye check at the first sign of any visual change. If you have to stop hydroxy because of early signs of eye changes, then its not such a big deal as it was for mum, because there are so many other options for meds you could take instead. I can't see that having an eye check in advance is going to do much, and your rheumatologist is right in saying that kind of eye side effect is rare, but please don't ignore any changes to your eyesight once you are on hydroxy - particularly any blurring in the centre of your vision. Macular degeneration doesn't cause pain it just causes loss of vision - starting in the centre and working outwards. Painful eyes could be something different, and still need checking out properly and treating promptly as inflammatory eye conditions (hat can also cause permanent damage if left untreated) can frequently go alongside autoimmune conditions, but thats not the kind of problem that would be caused by hydroxy.

  • Hi. I have Sjogren's Syndrome and have been on either 200 to 400 mg. of Plaquenil a day. I have always been told to have my eyes checked every 6 months. I did that for a long time and then asked my doctor if once a year was okay. She said yes. Now I have read where you could possibly have retinopathy and/or tissue toxicity if you have been on the drug for more than 5 or 7 years. I have been on at least 200 mg. now for over 15 years so that worries me. This past couple weeks my left eye has been particularly irritated; will be watching closely now. If I were you, I would definitely have a test done after 6 months just to be on the safe side. They claim that you would get color-blindness if you became toxic. They always do this color testing on me and also the field dot vision test. I always pass with flying colors. Hope this helps, ppwogan. :)

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