Hydroxychloroquine and eye testing: Hi everyone... - LUPUS UK

LUPUS UK

31,603 members28,009 posts

Hydroxychloroquine and eye testing

Nurseladybird profile image
30 Replies

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 💐

Written by
Nurseladybird profile image
Nurseladybird
To view profiles and participate in discussions please or .
Read more about...
30 Replies
whisperit profile image
whisperit

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

Nurseladybird profile image
Nurseladybird in reply to whisperit

Thanks Whisperit 💐

Lizard28 profile image
Lizard28

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.

Nurseladybird profile image
Nurseladybird in reply to Lizard28

Thanks Lizard 💐

nancarolyn profile image
nancarolyn in reply to Nurseladybird

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

Nurseladybird profile image
Nurseladybird in reply to nancarolyn

Thanks Nanno, that’s reassuring 💐

Sara_A profile image
Sara_A

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

Nurseladybird profile image
Nurseladybird in reply to Sara_A

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.

Sara_A profile image
Sara_A in reply to Nurseladybird

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

Nurseladybird profile image
Nurseladybird in reply to Sara_A

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 💐

Nurseladybird profile image
Nurseladybird

Very true Whaleroad! Thank you 💐

Ianrussell69 profile image
Ianrussell69

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 !

Nurseladybird profile image
Nurseladybird in reply to Ianrussell69

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!

_jenc_ profile image
_jenc_

Hi there,

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

Nurseladybird profile image
Nurseladybird in reply to _jenc_

Thanks Jen 💐

_jenc_ profile image
_jenc_ in reply to Nurseladybird

Take care 💜

Heatheric profile image
Heatheric

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.

Nurseladybird profile image
Nurseladybird in reply to Heatheric

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

milkwoman profile image
milkwoman

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.

Nurseladybird profile image
Nurseladybird in reply to milkwoman

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 💐

Paul_Howard profile image
Paul_HowardPartnerLUPUS UK

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.

chrisj profile image
chrisj

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 :)

Nurseladybird profile image
Nurseladybird in reply to chrisj

Thank you Chris 💐

Poshcards profile image
Poshcards

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

Nurseladybird profile image
Nurseladybird in reply to Poshcards

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

GloomyEeyore profile image
GloomyEeyore

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.

Nurseladybird profile image
Nurseladybird in reply to GloomyEeyore

Thanks GloomyEyeore (love the name) 💐

SjogiBear profile image
SjogiBear

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...

Nurseladybird profile image
Nurseladybird in reply to SjogiBear

That’s great advice, thanks Sjogi 💐

MXT946 profile image
MXT946

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...

You may also like...

Hydroxychloroquine and Eye test advice

how important annual eye tests are. My rheumatologist has never mentioned eye tests. I have on...

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

to the opticians every year. I rang up her secretary to ask which test I needed at the opticians...

NO Hydroxychloroquine

trouble getting all my hydroxy prescription last month and now I’ve been told there is NONE...

Eye tests and plaquenil

Hello I just want to check how frequently you should get your eyes tested when taking plaquenil. I

Hydroxychloroquine

As anyone who takes this medication knows, we are advised to have yearly eye tests, so, as...