Plaquenil/Hydroxychloroquine - which eye tests do you need and when?

I'm aware that I need regular eye tests on hydroxychloroquine and my consultant did briefly mention it (very briefly!) that I needed to go to the opticians every year. I rang up her secretary to ask which test I needed at the opticians and she said it was the same one as for glaucoma with the little puff of air but reading around on here that doesn't sound true...

Any advice? And just an ordinary opticians or some kind of specialist?

10 Replies

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  • I asked this question when I went to Moorfields eye hospital for my Sjogrens and your local opticians can do the test - hope this helps

  • Hi Jennie,

    I just get an annual check and advise the optician that i'm on plaquenil and other meds and ask them check that there is no deterioration to my retinas when doing my eye test. I have had a dye put in on two occassions and to date other than light sensitivity due to other conditions i have had no deterioration or increase in my prescription in 14 years. To my knowledge the chances of anything occuring are remote and I have not encountered anyone who has had a problem due to plaquenil.

    I hope this helps.

  • I have got an opthalmologist appointment at the hospital on the 14th of this month because in the last 6 months I have noticed problems with my eyes, whether it is the plaquenil or not is yet to be discovered. I wear varifocals and have done for years but my night vision is appalling, very blurred with or without my glasses. Will let you know what the hospital say.

    I have heard of one other person whose eyes were effected by the Plaquenil, and they had to come off it and the eyes did improve.

  • Good question

    Back on nov 5 (i think it was ) i felt there was a really good discussion about hydroxychlorouine & eye tests here. One of us posted detailed info about her experience & the different types of eye test anyone on plaquenil etc would probably be best to have, and the frequency. I was glad of this cause, like jennifer, when I started plaquenil last June I'd only had brief advice, and I felt maybe more was needed than your basic eye test annually + more frequent amsler grid tests.

    Well, that nov post here recommended a visual field test every 6 months, and a computerised 3d retina scan every year - She said she had been on plaquenil for 12 years, regularly having these tests (inc I guess doing her amsler grids) and she felt they were really important, but so far she had no eye problems. Anyway, my ophthalmologist didn't have the retina scanner, but they agreed i should have a scan regularly and told me where to go instead. So now I feel like I'm sorta doing what can be done...but maybe someone on forum has more advice to share on this serious stuff?

  • Great, that's really helpful. I can save time (and money - after all I have to pay for these tests!) by asking when I make the appointment whether they have a 3d retinal scanner and whether they can do visual field tests.

    Thanks

  • you can go to a normal opticians but make sure they know you are on hydroxychloroquine and expect them to do a peripheral vision field test that involves looking into a machine and pressing a button when you can see a flashing light in various places over a circle within the machine very easy, they can then tell if there is a problem with the peripheral vision which could be caused by the medication. Tell them you need to have yearly checkups too, hope this helps

  • There is an excellent article in the recent News and Views (published by LUPUS UK ) on Hydroxychloroquine and its uses and side effects, particularly useful information about the eyes.

    I am one of those who has retinal damage and some loss of sight due to the drug and I came off it 9 months ago. My sight has not improved. It is rare but all those on the drug should keep a look out for problems. I could not believe it when this happened to me; I was so shocked and angry for a while.

  • Glad if I can help at all. I felt same way you do: these tests aren't cheap. My impression is that others have these scans recommended (eg diabetics) so seems to me these scanners may become more widespread. But I have a feeling at the moment they aren't everywhere. So, there must be a more trad less high tech of looking into the retina. But I don't know how effective that would be compared to the scanner

  • I agree it's expensive and after all diabetics and people with glaucoma (and even people with close relatives with glaucoma) get free NHS eye tests. I feel we should too if we have been told that we have to have them!

  • I'm afraid it seems to be all down to cost/benefit analysis. This is such a rare side effect that the costs involved in providing the tests most likely outweigh the benefits gained for the 1 in 2000 patients who may suffer irreversible eye damage.

    At the end of the day only you are responsible for your health care.