Problem with my eyes: Hi All For the past week I... - LUPUS UK


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Problem with my eyes


Hi All

For the past week I keep having episodes of burning in my eyes, like smoke or some other noxious irritant. Just wondered whether it could be to do with hydroxy. I have not seen my ophthalmologist in almost 2 years Should I be concerneded, or (like I am prone to do, ignore).

Thank you lovely people.

Babs xx

21 Replies

Could be dry eye - and you need to see at least a really good optician at least every 2 years.

Eye tests are recommended every year on hydroxchloroquine.i had mine done in sept

Didn't notice that, oops. But surely THAT should be up to the rheumy to emphasise?

Yes it should and mine does but once I had my first eye test on hydroxchloroquine my optician sends me a reminder x

Do you not get a baseline assessment?

I get a full eye test and have the amsler scale chart at home on my fridge.i think it's the colour spectrum test they dont do I think the hospital do that one but I'm not sure 🤔

Sorry it's the cambridge colour test x

Hi I would definitely not ignore , I ended up at eye hospital as I was on hydroxychloroquine and it really messed with my eyes so had to come off it - you should be seen at least yearly whilst on hydroxychloroquine x

Your eyes should be tested every year whilst taking hydroxchloroquine as it can cause retinal toxicity. You could try some hypomellose eye drops.i have sjorgens which causes dry eyes and that's what I use xx


If you’ve got one autoimmune disease you’re likely to get others as most will agree: dry eye, dry mouth, dry vagina etc could point to Sjögren’s syndrome?

Yes, IDK about the need for regular visits to ophthalmology when you’re on HCQ but the possible Sjögren’s disease needs checking out as well. Eye lubrication gels, moisturising eye drops can all be prescribed. Also check out BSSA website for more info on Sjögren’s!

Just wondering but not diagnosing!



I have lupus and sjogrens which is common to have more than one autoimmune condition and I suffer with dry eyes, burning sensation as well. I have ointment for nighttime and use drops during the day which helps alleviate the symptoms. Also, like everyone has said, make sure you have your eyes checked. My rheumatologist sorted that out for me.

Some local opticians are emergency eye clinics for your local health authority .Find out yours and have an appointment you don’t need to pay as it is NHS.


The symptoms you describe are more like Sjögren’s.

With HCQ there’s a risk of retinal toxicity or more specifically called Hydroxychloroquine induced retinopathy as recognised by the ROYAL College of Ophthalmologists. This can develop insidiously🤔 and painlessly hence its most important that you get checked out at an ophthalmology centre.

All on HCQ should be screened yearly for this side effect of HCQ. Do not deny yourself.

The “burning eyes” are not symptom of retinopathy. Cloudy vision, floaters, blind spots are...

Check yourself in ASAP!

Here’s some guidance from the MACULAR SOCIETY:

babssara in reply to Ickybicky

Thank you. Really informative.

Babs x


Hi Babssara,

I recommend that you get your eyes checked to monitor if any changes have been made to your eyes since your last appointment.

A burning sensation of the eyes can be associated with Sjögren’s syndrome. Sjögren’s syndrome can cause dryness of the eyes, mouth, nose and vagina.

We published a blog article on coping with dry eyes and mouth, the article contains some general tips for preventing dry eyes which you may find helpful -

The NHS Choices’ website provides information on various types of treatments to help relieve the symptoms associated with Sjögren’s syndrome which I hope will be of help to you:

Best wishes,


Hi Thanks. I have been diagnosed with Sjogrens, Hughes and a couple of other SLE little pathways. But my eyes (and skin) are causing my sleepless nights.

Babs x

From the ROYAL COLLEGE OF OPHTHALMOLOGISTS on screening for Hydroxychloroquine induced retinopathy/maculopathy:

Please read carefully.🤔👀

Newby12 in reply to Newby12

Just to add to ickbybicky’s excellent post above.

From the British Sjögren’s Syndrome Association, a downloadable info sheet:

Useful and informative.

As many have written already, it sounds like Sjogrens. I have both SLE and Sjogrens. My eyes are slowly getting worse. I see an ophthalmologist every 6 months and currently am getting fitted for scleral lenses (PROSE device) to help with the dryness and irritation. I’m also on blood serum tears (eye drops made from my blood serum) which are really great.

If I were you I’d go see an eye specialist to see what’s going on.

babssara in reply to milkwoman

WOW, you are going through it. I feel as though my problem is not worthy.

Babs x

Please go to your optician. I had mine tested every six months on Hydroxychloroquine 400 mg so when they upped the dose to 600 mg the Optician spotted the problems immediately and sent me to the Macular Unit. Good luck xx

When taking hydroxychlorquine I have to see the eye doctor every 6 months and I also have dry eyes and use xiidra eyedrops

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