Hi I've successfully been on hydroxychloroquine (and sufasalazine) for my RA for just over 4 years. I noticed that my eyes were dry before Xmas and got some over the counter drops. Since then I've noticed that they're quite sensitive to light - my eyes feel tired and I keep blinking.
I've set up blue light filters on phone and computers which haven't made a massive difference tbh.
I know that eye issues can be a side effect of Hydroxychloroquine and have an annual eye test - last one being in December 2024. All the usual tests were ok but the optician did mention that a hospital check after 5 years on hydroxy is the norm.
Has anyone else experienced this? My next step is to go back to optician plus GP (meds outsourced to GP now rather than hospital)
Many thanks
Written by
Rambling9
To view profiles and participate in discussions please or .
I have been taking hydroxychloroquine since 2015 so that is almost ten years. . My husband is a retired optometrist.
Every year I have an eye test and a CT scan of the inside of my eyes - that is important. I have mine done at my optician, ideally it should be done at a hospital but the eye department at my hospital is incredibly busy with its own patients without patients from rheumatology. Rheumatology could easily rent a CT scanner and train a couple of nurses to use it but that doesn’t seem to happen.
I have had very dry eyes all of my life so it is nothing to do with the hydroxychloroquine - I use preservative free eye drops most days . I also take OmegaThree Algae capsules every day.
I originally took them for my bones (I have osteoporosis) but when I ran out and didn’t restock I discovered my eyes felt really bad, using them I find I can cut back on the eye drops which I probably shouldn’t. I also discovered ‘eyes’ are one of the things they are good for. Its written on the back but I hadn’t noticed until then.
So I use dry eye drops - I vary from once a day when things are good to several times a day when conditions aren’t good. I use something like Theolose Duo / Hyabak or HycoSan during the day or if my eyes were ridiculously dry (that was before I discovered the Omega Three capsules) I have also used a preservative free gunky ointment at night. Make sure you drink enough water to stay well hydrated.
I also use a thing called an eye bag. You heat it in the microwave for a little while then lie down with it over your eyes, you can hold a face cloth squeezed out in hot water over your eyes, I actually prefer that to the eye bag but I use both.
I haven’t tried to get any of my drops etc from my GP although I know some people do. Your optician ought to be able to sort you out but ask for a CT scan if you haven’t had one already.
Thank you, that's helpful. I have the hycosan drops from the chemist and will try omega 3 too and a hot flannel! Plus I'll get back to the optician to see exactly which scans they did in December and try the rheumy nurses who may have some insight.
I've been on HCQ for about 15 years. When the Rheumatologist referred me to the hospital eye department they refused as I have no comorbidities. That was the end of that and I go to Specsavers annually.
Exactly - just think how busy a hospital eye department can be and then think why should they test for rheumatology when they could rent - no need to buy - their own machine and train a couple of nurses or even an optician there to do it themselves.
Obviously if things don’t look good then they can refer you to the hospital eye dept but with the way things are it’s a bit off to expect another dept to monitor your patients.
Apart from that why anyone want to wait for goodness knows how long to have it done in a hospital when you can book with your local optician and be seen quickly?
The tests at a specialist unit in hospital is far more in depth than an opticians. My specsavers told me they do not do these specialist scans at all , so please be careful x
I was on hydroxychloroquine for 6 years, when my Rheumy decided as I was in remission and because of the possibility of eye problems, I should try coming off it. At my optician appointment in October, I paid (£6 in our area) for an extra scan and that revealed the very slight beginning of macular degeneration, so I am now on supplements. So it is worth getting as much information from your optician if you cant get the CT scan . I hope all goes well at your 5 year check.
I have dry eyes and like you I've had it checked out. I use hydro scan eye drops Red, from my Specsavers. They think it could be due to heating in winter also hayfever from Spring. I've been on hydroxy chloroquine for over 5 years and just had my 1st eyes tested at the hospital. I was told that I need to go every year to see them (as long as I'm on hydroxy) also need to see options every year. Good luck in finding the correct eye drops. I've tried a few, before finding one that's working for, (for now.)
I've been on Hydroxychloroquine for about 10 years and even though I don't have any problems with my eyes I still go for an eye test/check-up every year. Recently I had a telephone call from my GP surgery and the nurse I spoke to said that wasn't good enough and referred me to the hospital for a thorough eye examination! The appointment came through pretty quickly and now I'm in the system I'll get a check-up every year at the hospital.
Wow! I know I am biased but I do think that’s a bit insulting to opticians for a GP to say that! I can think of more than a few patients my husband came across in his career who had been dismissed by their GPs and who actually had serious problems. I would never consult my GP about anything to do with my eyes. A lot of opticians can give you a direct referral to an eye department - saves a lot of time.
Thanks everyone - the opticians did an OCT scan, glaucoma tests, peripheral vision test and regular vision test. Presumably the tests people have had done at hospitals are different as the optician spoke as if they were?
Hi. I've been on Hydroxychloroquine for 2 years and haven't long started my Amgevita. I also have yearly eye checks. Just been last week and said that my eyes feel dry, sometimes feel bitty when I blink. They said it was normal. Just to put dry eyes in and perhaps bathe them. I always make sure I have all the proper eye tests. Luckily no other problems so far. Hope this helps.
I had similar and I felt like I had conjunctivitis coming and going. Anyway I phoned the rheumy and they made me an appointment with the ophthalmologist in the hospital. After various scans she told me about using the eye drops 3-4 times a day and a heated eye mask for 5-10 minutes of a night. She also put me on 45 days of antibiotics because I have blepharitis which like everything else is made worse because of the rheumy. Just finished and my eyes do feel a lot better. I am also on hydroxychloroquine and she told me the effects on your eyes are quite rare and just need checking every five years. Also…I don’t know what your situation is but you can get the eye drops in prescription if it works out better for you. I have a prepayment certificate x
Did your eye test include checking for macular degeneration? That is the test that needs to be done for people on hydroxychloroquine, I believe. I have an optician that does that test - otherwise it has to be done at a hospital.
The dry eyes might be due to sjogrens starting, it is one of the many auto-immune conditions, maybe let your rheumy know as it might not be related to the hydroxy (equally it could be).
There's a piece of software called f.lux which is good for reducing blue light from computers, the infrastructure team suggested I put it on my pc at work. It's free for personal use.
I hope it’s something you are able to find out what it is that’s causing this for you. For me, about three years in to taking Sulfasalazine, I had a relatively sudden onset of migraines which was often set off through light sensitivity, noise sensitivity and sometimes motion (eg driving). It took a long while to work out that it was the Sulfasalazine causing it all along.
I’m hoping my experience was pretty uncommon (as none of the doctors seemingly picked up on it… it was more to do me thinking there MUST be something I was taking at the time contributing to it) so just thought I’d share that, as a just in case. I hope it gets better for you soon
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Eye infection - antibiotics
Eye troubles
Hydroxychloroquine side effects
Hydroxychloroquine causing retinal damage
Hydroxychloroquine and eye tests
