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LUPUS UK
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Hydroxychloroquine and eye testing

Hi everyone,

Can anyone tell me how often they attend their local hospital for their eye tests on Hydroxy?

My rheumy has told me to have my eyes tested at the optician every year, but that I only need to attend the hospital for monitoring every 5 years. My friend in USA who is on Hydroxy has her eyes tested every 6 months and most people seem to be checked every year, so I wondered if anyone else was on 5 yearly monitoring? Or should I be concerned?

Many thanks 💐

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Yearly optician check for me. No-one has ever suggested anything more. I've been on hydroxy for 2 years. x

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Thanks Whisperit 💐

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I went and got my eyes checked as per rheumy’s request. My optician told me he was doing trials at uni for two years, he checked patients every month that were on hydroxy. They stopped them as no one was affected by it but a once a year check was sufficient. He told me not to worry, he was more worried about my dry eyes. Only time will tell but I will get them checked every year anyway.

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Thanks Lizard 💐

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I have been on hydroxy for over 30 years except when pregnant. I have my eyes checked every 6 months. Never had a problem. Took mostly 400 mg a day. Take care. It is a pretty safe med. God Bless. Nan

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Thanks Nanno, that’s reassuring 💐

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I have been on hydrox for several years now and I just have an annual optician appointment with retinal photos that’s the important bit to check the retina ( I believe!)

The only time I’ve ever been seen at the eye hospital was when I was having other issues with my eyes from lupus but not related to the hydrox

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Thanks Sara. Can I be really nosey and ask what other issues you had with your eyes? I find my vision is quite blurry sometimes, like my glasses are the wrong prescription, but a few hours later my vision is fine. Or sometimes it’s like I have a large dark patch just on the periphery of my vision, down towards the bottom right. The optician has found no reason for it though. I also have the obligatory dry eyes.

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I think previously I had uveitis like red eyes. I get dry eyes too and have a problem with focusing so ended up going from ocassional glasses to all the time as I have to squint at everything and still can’t really see!

I also get blocked tear ducts on lower lid which I have to bath with warm compresses and use lacrilube eye ointment before bed which I find great

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Honestly, I feel like such a fool sometimes, scrabbling around for my glasses because I can’t see, only to find they’re already on my face 😂 Thanks for your reply. I never know what might be Lupus/autoimmune related or might just be ‘me’, so your reply was really helpful 💐

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Optometrist at least once a year and then annual hospital checks after five years. Report any vision changes immediately.

Rheumatologists don't seem generally concerned about hydroxychloroquine dangers anymore, but it's not their eyes at risk is it.

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Very true Whaleroad! Thank you 💐

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Only today the drs rang and checked I had had an eye test befor renewing my hydroxy but I don’t get it done at hospital I have to go to spec savers and pay I did ask if I had to pay due to the Meds but if I’m not on bennifits I pay !

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Blimey, that’s harsh Ian. I’m lucky enough to get free annual eye tests because my dad had glaucoma - so I’m hoping I take after my mum!

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Hi there,

Similarly to others, I also get my eyes checked annually. Hope that helps! Take care. Xx

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Thanks Jen 💐

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Take care 💜

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I've been on hydroxy for 5 years and rheumy referred me to ophthalmologist. He said that there are new guidelines produced in USA which focus more on the dose in relation to your weight than the length of time you are on it. So for the first time ever I need to keep my weight up otherwise if I go below 80kg my dose will need to be reduced! I'm also now seeing ophthalmologist annually.

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That’s interesting about the weight thing - Best reason ever to eat cake! Thanks for your reply Heather 💐

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I’m in the US and see my ophthalmologist every 6 months with in-depth testing annually. The in-depth testing includes using a machine to test my visual field range, another one that takes scans of my retina, and dilation to check the health of my optic nerve.

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Thanks MilkWoman,

My optician checks my field range every year, but I only had the retinal scab when I started Hydroxy 2 1/2 years ago and my rheumatologist said I don’t need that again until I’ve been on it 5 years. Thankfully, that seems pretty usual for UK 💐

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Hi Nurseladybird,

Most people taking hydroxychloroquine will have their eyes tested annually by an optician. It is important to mention to them that you are taking this drug so that they can do a full visual field range check.

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I have my eyes tested once each year. I was instructed by the doctor, who told me I had Lupus about 13 years ago in rheumatology at the hospital, how important it was. She gave me a piece of script to read there and then and when satisfied all was well prescribed hydroxy (plaquenil). I've been on it ever since starting with 2 tabs that were reduced to 1 per day a couple of years ago because the rheumatologist was concerned about the effects on my eye sight

I started seeing double some years ago and now need a prism in my lenses to correct it. It has nothing to do with lupus or plaquenil. The eye specialist I saw said it was more likely to be a defect I was born with thats suddenly come to light, a loose muscle in my left eye. Thankfully the glasses I wear deal with the problem very well. I'm due a sight test next week and so far they're happy that all is well, no problems from medication. They asked for a list of meds on my first visit. Make sure you see your optician as instructed and you'll be fine :)

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Thank you Chris 💐

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Hi, I have had SLE for 25 years and been on hydroxy all that time and only ever had test at my Rheumatica hospital once! X

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Blimey, I should probably stop worrying then. Thanks Poshcards 💐

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I have my eyes tested yearly by my optician. If they find any problems then I will be seen by an ophthalmologist. Thankfully I haven’t needed to go to ophthalmology. Last eye test was done last week.

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Thanks GloomyEyeore (love the name) 💐

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Just to add to the discussion, I also just pay for an annual eye test at the opticians. However, I was advised by them to check my own sight regularly i.e. monthly using an Amsler Grid at home so then if there are any anomalies, you can get a referral to ophthalmology via your GP. You can print off a grid for use at home from a website such as this one or just ask your optician - I was given one by the optician at Specsavers.

eyecaretrust.org.uk/pdf/eye...

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That’s great advice, thanks Sjogi 💐

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The screening guidelines for patients taking hydroxychloroquine/Plaquenil were updated in 2016 to be tested within the first year for baseline and then annually after 5 years. If your risk factors are higher, more frequent testing is recommended.

Interestingly, the risk prevalence for macular toxicity was updated from 1% in 2011 to 7.5% in 2016! That's a huge jump and may reflect research and doctors more clearly finding and reporting macular toxicity from patients being prescribed this drug.

It's often a finger pointing battle between the rheumatologist (or prescribing doctor) and the ophthalmologist because neither wants to accept liability for either over-prescribing or not catching macular toxicity early enough. There are very few drugs that require this type of screening, so the risk is clearly there. It's a tough call for those of us who benefit from this drug. It scares me to risk losing the ability to read (since that's how I cope with not being able to do so many activities), yet it truly helps my SLE and erythromelalgia. Agh!

They also updated the dosage recommendations to be based upon weight, as many SLE/RA patients are underweight and overdosed. It's worth a read to make sure your current dosage does not put you at greater risk for macular toxicity.

reviewofoptometry.com/ce/ti...

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