Hydroxychloroquine and Eye test advice: Hi, I am... - LUPUS UK

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Hydroxychloroquine and Eye test advice



I am new on here and have been familiarizing myself with the site. I have found lots of posts saying how important annual eye tests are. My rheumatologist has never mentioned eye tests. I have on medication for over 2 years now and starting to worry.

Should I make an appointment at optician or do I need a referral to eye clinic?

11 Replies

Hi. No need to worry, but you should be getting your eyes checked by an optometrist at least once a year. Tell them you are on hydroxychloroquine and they should know why that is significant. If they don’t, find another optometrist.

After five years you should be referred to a hospital eye doctor for more specialist tests.

I think your rheumatologist has been negligent in not mentioning eye tests. Eye problems with hydroxychloroquine are thankfully very very very rare, and tend to only occur after five years on the drug. Lately rheumatologists seem to be inclined to think eye testing isn’t necessary. But it’s not their eyes at risk, is it.

My rheumy did mention it. I have noticed quite a bit of degradation in sight over 5 years although I also take 5mg of prednisolone daily.

My last visit to rheumy I discussed my worries as I need new glasses every 2 years. ( didn't wear reading glasses before taking these meds) and she dropped dose from 600 mg daily to 400 and 600 alternative days. I weigh 87 kilos.

We have to remember without these meds we would be in a lot of trouble so until we have something else available.... I asked her about CBD and THC but she didn't know what I was talking about!

Keep on keepin on!

Don't worry. Start now by booking an eye test with an optician and make sure you go annually.

Recommendation to have an eye test annually I assume is still on the patient info leaflet.

I go to an ophthalmologist every 6 months for eye exams and visual fields testing. This is the standard of care here. It started as soon as I started the plaquenil/hydroxy. You can develop retinal problems on this med although very rare can be devastating. I think you should ask for the screening. My Rheumatologist asks at every visit, every 3-6 months if I’ve had my eyes checked. My best to you, Nan

Hi job 16

i would like to reply to your post by updating everyone on what has been going on with me. I was on hydroxychloroquine and chloroquine for 13 years and was noticing a decline in my eye sight over the last couple of years. I had been having 6 monthly eye tests with my optician( even though I had not been advised to do this by my Rheumy) which did not detect any noticeable changes. Anyway to cut a long story short, I now have significant eye damage (retinopathy) which cannot be rectified and it is affecting my daily life, I’m trying to stay positive but it’s very hard when you rely on your eyesight for everything. I have been told this is very rare, so I’m not trying to frighten any one but just want to make you aware that regular tests with an Opthalmologist are necessary especiially if you have been on the medication for a while.

Hi Jbo

I was told by my GP and dermatologist to have annual eye testing when I was first prescribed hydroxychloroquine. The optician will check the health of your eyes and u must tell them that u have lupus and are taking hydroxy. My optician is really good and explained on the pictures of my eyes which area of the eye he is looking at to check for damage. They really do check the total health of both eyes. Don't worry but do book an appt with optician n get them tested..u don't need a referral for this..I go to vision express but I think they're all pretty standard and with the computer age they can get good images of our peepers 👀xx

Ps...Hello n Welcome to the group.. we're a friendly bunch of warriors with plenty of experience of living with autoimmune disorders..we have quite a laugh as well!! Xx

It is very important to have your eye health monitored by an ophthalmologist while on hydroxychloroquine as there is a risk the medication can lead to macular degeneration. There is also the risk of toxicity so it is important to be on the lowest dose based upon your weight/height. I see my ophthalmologist every six months and so far so good (I’ve been on Plaquenil since I was diagnosed in July 2014, 300mg taken daily in a split dose).

Yes you should have yearly eye tests. Just for safety’s sake. I have been taking it for years and have had no problems.

Thank you all for advice. I will pop and book an appointment this weekend.

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