Hydroxycoroquine / eye test

[Riddlemethis]

Can anyone share any info they have on the eye test and what it involves for taking Hydroxy, received a hospital appointment today which is news to me ?

[allanah]

It's a photo of the back of your eye. Hydroxy can cause eye problems bug it's very rare. It's a 5 minute test but my eyes got dilated so I needed a lift hime. So far no problems with eyes but I did get abscesses and mine was stopped due to that lol......

[Caza]

I had my first one at the hospital last year, it’s because I’ve been taking Hydroxychoroquine for 6yrs now. If it’s the same as the one I had it was very through. It took about an hour & a half, involved all sorts of tests. I also had drops put into my eyes which I wasn’t told about. It was just as well that I hadn’t driven because there’s no way that I could my vision was very blurred & didn’t really go back to normal until the next day. Phone them & ask so that you are prepared. Nothing was painful or uncomfortable. I just wished I’d been warned about my vision & the length of time it took. I’m to have another one in November.

[charisma]

Hi riddles

I had another visit to Ophthalology a month ago. Full dilation of eyes; two types of drops, one was an anaesthetic in order to put tester against eyeballs for fluid test, the other was dilating drops for seeing and photographing back of eye etc.

And there was a field of vision test, and pressure test.

I was there extra long as an emergency came in and took priority but it should have been 1-2 hours there.

Very blurred vision after, instructions sent with appointment beforehand warning not to drive due to dilation.

Even walking was not easy with such blurred vision.

Best to ensure you what to expect before you go. Good luck!

[nomoreheels]

I used to have my tests by the Opthalmologist at hospital as I had light sensitivity on hydroxychloroquine. I wasn't living in the UK at the time but the baseline one was just as given for retinopathy screening in this from the Royal College of Ophthalmologists, follow ups too rcophth.ac.uk/wp-content/up...

Best to have someone accompany you as if you're like me you won't be able to drive safely.

Hope it may be of help.

[CagneysMum]

My rheumatoid clinic has just advised me to get my eyes checked more frequently at the opticians, no offer of any hospital test. I’ve been on hydroxychloroquine for just under a year.

[LD1954 in reply to CagneysMum]

I work for a rheumatology dept and we refer everyone to an ophthalmology consultant if they have been on hydroxy chloroquine long term. You should have an annual eye check up with an optician. Your consultant can refer you to an ophthalmology consultant if you have concerns so I would push for this.

[Mall]

It is usually a number of tests to establish a base line of your current eye health when you start on the drug. Then you will have annual check ups and if any deterioration is noted the drug can be stopped before there is any significant damage. It is quite rare for any one to suffer damage and these check ups are precautionary. The tests will include a general eye test, field of vision test, photographing the eye and then an examination by an opthalomist, who will conduct a pressure test and give you eye drops so that he can thoroughly examine your eye and retina.

The tests are commonly done for any one who needs to wear specs and the elderly so are not particularly unusual. Each test takes approx 10 minutes but the waiting around in between each test can add to the time spent in an eye clinic as different folk do different tests. All the above can be carried out at a well equiped and appropriately staffed opticians as well as a hospital eye clinic and if you already attend an opticians for specs you could ask if future annual check ups can be transferred to them if it is more convenient. My local "spec savers" did mine when I was on this drug. I now attend a hospital eye clinic for check ups which are unrelated to this drug.

The eye drops can blur your vision a bit for a couple of hours, as your pupils are fully open, but this will vary from person to person and is worse in bright light, I take sun glasses to wear afterwards if it is sunny. You are safe to walk about and travel alone on public transport but you are not considered safe to drive and your car insurance would be invalidated if you had an accident.

Hope this is helpful.

[Riddlemethis]

Thank you all so much for your replies I feel a bit more in the know now , there’s so much other stuff to deal with having RA , even all the meds you have to take could cause another serious problem , I was diagnosed in January this year after a previous year of continuous flare ups , my rheumy then found 15 points of RA from my neck down to my feet , I know you just have to get on with it but we are all human and it does really get you down and times even whilst your trying to keep on top of yourself emotionally etc etc.... it’s like a bloody merry go round lol , I really appreciate all your responses , I’m so glad I joined this forum because I get a lot more info from others that live with the disease than I do the medical experts. Thank you all and I hope you all have a good day 👍🏻🙃🙃

[Poshcards]

My optician told me to go to GP's about this test and get an appointment at the hospital. GP knew absolutely nothing of these tests and it was left for him to find out, that was 3 weeks ago and still heard nothing. My lupus consultant then told me they are looking into the funding for these tests and it shoud happen in the next year! I have been on Hydroxy for over 20 years!!

[Mmrr]

I got mine done at specsavers , no waiting lists and the most up to date equipment, highly trained opticians. I cannot recommend them highly enough.

[Hidden in reply to Mmrr]

Me too Mmrr, always recommend them.

[Mandalou]

Hi riddles,

I’ve been on Hydroxychloroquine since 2015 and as usual with RA , hospital and GP in the UK the right hand doesn’t know what the left hand is doing.

The Hospital wouldn’t care whether I had these eye tests or not, the GP obviously get some sort of computer flag up and send me a message to get the test done without telling me where to go and the optician I go to doesn’t really seem to understand about the risks behind Hydroxychloroquine long term usage.

This leads me to pay £60 something myself for the all singing all dancing test . Just to make sure.

The back of the eye test with drops I have done due to having steroid induced diabetes ( even though currently I have a normal HBA1C) and take no meds for Diabetes.

There are NICE guidelines regards eye testing when on Hydroxychloroquine but no one in the four years since diagnosis has ever referred me through the hospital system it’s just been left to me.

Yet another example of having to be your own advocate and having to become your own expert which is the advice I give every person new to the trials of RA .

Wishing you the best.

M x

[Hidden]

I only ever had the initial eye checks at the hospital before starting hydroxy and then every year at the optician. Never been told I need to be seen at the hospital too.

[Mandalou]

rcopth.ac.uk

I’m going to print this out and take it to my next appointment with the Rheumatologist in August.

Sorry my link didn’t work but it’s easy to find online. Essentially guidance on the royal college of Ophthalmology website and the Macular degeneration society.