hydroxychloroquine

[Roya4]

What does of hydroxychloroquine do you need to be on in order to get an eye test?

[marypw]

You need an eye test before starting on any dose of hydroxychloroquine and annually thereafter.

Get a standard eye test plus an OCT scan.

There is a thread earlier about tests at opticians or hospitals. I always use Specsavers; NHS hospital one not available here.

[Beau2016]

Hi I've been taking 400mg for 7 years, which is higher dose than recommended for my weight. I think NICE guidelines say you should have a scan every year once you've been on HCQ for over 5 years. I've had one eye test in hospital in 7 years, everything was normal.

[Djlr in reply to Beau2016]

Every YEAR get EYE FIELD VISION TEST.

I have 5 FRIENDS in Lupus Support Group over 12 years that had EYE TOXICITY from hydroxychloroquine-

They can’t take anymore & some LOST more VISION than others because it was CAUGHT SOONER.

Very important- only MAJOR problem w/using HYDROXYCHLOROQUINE- otherwise wonderful DRUG to keep LUPUS in CHECK.

mft.nhs.uk/app/uploads/site...

lupus.org/resources/protect...

[Beau2016 in reply to Djlr]

unfortunately my hospital won’t offer test every year.

[Djlr in reply to Beau2016]

I just read several ideas at what to WATCH OUT FOR “at home” -

One person said her EYE DR gave her an EYE CHART at home to use to check if I noticed any changes or a few times a year (if SKIPPING a yearly EYE exam.

Another person said she had what was call “doughnut vision”, blurry vision, ….

SO - just watch out for any VISION CHANGES - if you do, “CALL IMMEDIATELY” to see OPHTHALMOLOGIST to get in for MEDICAL VISION PROBLEMS -

Read these people’s experiences:

drugs.com/answers/has-anyon...

[Heatheric]

My understanding is that there is a slight danger of damage to your central vision over time. I see an ophthalmologist every year for that test. He says he will see any changes before I notice changes in my sight. In recent years the clinical advice is to set the dose by your weight rather than how long you've been on it. Heather

[Djlr in reply to Heatheric]

mft.nhs.uk/app/uploads/site...

[lupie46]

I take 400mg daily and go to Specsavers annually. I have to pay. I've been on hydroxychloroquine for 15 years with no problems. Eye test is reassuring.

[pattypatchwork]

Hi, boots don't charge extra for the additional test required which specsavers does.

[Partner20 in reply to pattypatchwork]

Specsavers, Vision Express and independent opticians all charge extra for the add-on OCT scan. Boots have an add-on charge too if you check their website for the OCT scan info. This scan is included in M&S adult eye tests, but I think they may cost more than other high-street providers.

[BonnyB]

I lost weight. So my 400mg dose was lowered. I take 200mg am and pm Mon to Fri. Then 200mg am only at the weekend .

[Hamptons]

any dose requires regular monitoring.

[Djlr in reply to Hamptons]

agreed.

lupus.org/resources/protect...

[Minnie2000]

It can increase your risk of developing retinopathy after 5 years and the risk increases further after 10 Years on the medication. Detailed tests and pictures of the retina are taken so any sign can be detected before you notice a problem yourself as it cannot be repaired. I'm not sure how soon screening starts once you've taken the medication as I've been on it over 15 years. There is more info (and more detailed technical info I can't tell you about ) online if you Google the screening program. The Welsh government put a lot of money into a project recently to ensure everyone taking it was screened. Only had my first screening this year - up until then I just went to the opticians and mentioned I was on it. They didn't do the same depth of tests.

[flo_IarFachYrHaf in reply to Minnie2000]

Are the welsh gov helping with the pictures of retina? I'm about to organise it privately, my opticians have the equipment but not available on NHS.

[flo_IarFachYrHaf in reply to flo_IarFachYrHaf]

I can see a target for 2024 is: One primary care optometry practice in each health board will be involved in the all Wales Hydroxychloroquine monitoring gov.wales/sites/default/fil...

[Minnie2000 in reply to flo_IarFachYrHaf]

Yes, it's a thorough series of different tests and pictures of retina also taken.

[Djlr in reply to Minnie2000]

mft.nhs.uk/app/uploads/site...

[DMM01]

I have taken for 26 years, also had dose lowered due to weight around 5 years ago. I have eye tests with spec savers every 2 years and the works done at the hospital once a year, I am there around 3 hours, it's very thorough!

[Djlr in reply to DMM01]

lupus.org/resources/protect...

[flo_IarFachYrHaf]

I've been on hydroxychloroquine for 10 years, as soon as optician saw it on my medication she said she would do extra tests, but to get the retina photo I have to pay, just thinking about sorting it now

[Minnie2000 in reply to flo_IarFachYrHaf]

I was under the impression that everyone in Wales would get the screening at some point. It was my rheumatologist who referred me pre-covid and just had the appointment back in February.

[flo_IarFachYrHaf in reply to Minnie2000]

Thank you for your replies.

I'm under care of GPs now. Wonder if I should ask them. but could ask opticians.

[Djlr in reply to flo_IarFachYrHaf]

mft.nhs.uk/app/uploads/site...

[Djlr in reply to flo_IarFachYrHaf]

RHEUMATOLOGIST should REFER if possible - since they put you on HYDROXYCHLOROQUINE & ask for the FIELD VISION TESTING.

[flo_IarFachYrHaf in reply to Djlr]

I haven't seen them for ages. So I will ask at GP surgery, but I might ask optician/ophthalmologist when I phone about the private appointment

[Djlr in reply to flo_IarFachYrHaf]

That is GREAT -

Of The ones I know who lost peripheral Vision, only ONE started noticing changes in VISION before the OPTHALMOLOGISTS caught it -

Then- “each one” saw SPECIALISTS that dealt w/VISUAL LOSS to see what could be done to help them.

WE need to SEE 🤗💜🤗

& we need our Hydroxychloroquine 😊

[Djlr in reply to flo_IarFachYrHaf]

lupus.org/resources/protect...

[Minnie2000]

Yeah, I'd ask gp. They should be able to refer you.

[Betty909090]

Hi All,

Please read this report written by qualified eye specialists! The Executive Summary is most informative and important.

IMAO there are too many opinions about HCQ induced retinal toxicity from GPs, patients etc?👆

Advice directly from the Royal College of Ophthalmologists:

rcophth.ac.uk/wp-content/up...

Note that it’s a 2020 report to be reviewed December 2023!👆🧏‍♂️

[Djlr in reply to Betty909090]

lupus.org/resources/protect...

[Betty909090 in reply to Djlr]

Thanks for posting!

From the Lupus Foundation of America. Wondering whether these guidelines have been revised?

[Djlr]

yes -

Dr Donald Thomas (Author of The Lupus Encyclopedia) is our MAJOR RESOURCE

READ his last ARTICLE on Hydroxychloroquine w/SIMPLE DOSING to HYDROXYCHLOROQUINE-

5.0 - BELOW = 1 pull (200 mg)

5.5 - 5.7 = (300 mg)

5,7 + = (400 mg))

But if below IDEAL BODY WEIGHT - VERY THIN - lower dosage As he discusses in ARTICLE

IT IS “NOT ABSORBED” in FAT TISSUE.

lupusencyclopedia.com/top-t...

[Mogcat]

I have eye test every year with my local optition. I have just had my dose of hydroxychloroquine reduced from 400mg to 200mg per day as my rheumatologist said there is research to say larger doses over long term use can cause heart issues. As there is a history of heart problems in my family I had to reduce my dose

Feels like their is always something to worry about