I’ve been on 400mg of hydroxychloroquine for 12 years continuously. I’ve only been told recently that I’m actually over the recommended dose based on weight. Is anyone concerned about potentially retinopathy and/or has had eye investigations where deposits have been found?
I attempted to reduce to 200mg but it put me into a flare that then progressed to the reoccurrence of pericarditis.
Here is a good blurb from NICE guidelines that I found on another forum. It succinctly outlines current guidelines surrounding hydroxychloroquine and retinopathy.
All patients planning to be on long-term treatment should receive a baseline examination (including fundus photography and spectral domain optical coherence tomography) within 6–12 months of treatment initiation;
Annual screening is recommended in all patients who have taken hydroxychloroquine for greater than 5 years;
Annual screening may be commenced before 5 years of treatment if additional risk factors for retinal toxicity exist, such as concomitant tamoxifen therapy, impaired renal function (eGFR less than 60 mL/minute/1.73 m2) or high-dose therapy (greater than 5 mg/kg/day of hydroxychloroquine sulfate)
Make sure you follow with an ophthalmologist at least yearly. Early detection is paramount to preventing any permanent retinal damage from HCQ. It happens in about 4% of those who take it.
Thank you. My GP has referred me to the eye hospital but because of Covid they are apparently unable to schedule a face to face appointment at the moment still.I’ve been for the extra back of the eye exam at specsavers in the interim hoping they’d be able to pick something up but I’m not sure if it’s the same exam.
I’ll make sure I get the annual review, when I can, as suggested.
Thank you for the information, I appreciate it!
In terms of dosing, there is an in between. I too was advised to half my dosage because I was taking too much but then ended up flaring. Now I take about the right amount. I take 400mg mon to fri and on saturdays and sundays I take 200mg. So it might be they can work out how much is right for you and spread it out?
Good idea! I will give that a go, thank you!
Thank you, very helpful.
My Rheumatologist said one of the difficulties is the screening service for this needs to be properly set up, rather than ad-hoc. They have been setting up a screening service with opthalmology for people on hydroxychloroquine. This will identify who needs screening and call them in as required. However I expect in many organisations it is still ad-hoc.
Everyone on any dose of hydroxy needs to do the hydroxy toxicity eye test each 6 mo to a year. I do mine each 6 months. Doesnt really matter how much you take as long as you do regular tests to make sure you arent getting hydroxy toxicity
Hi, I was put on 600 mg of Hydroxychloroquine after nine years on 400 mg. I developed problems with my eyes after a few weeks. When I checked the Amsler grid all the lines became wavy. I went to my Optician who did the scan of my retina and I was told I had fluid at the back of my eyes. I was taken off Hydroxy and at my last scan three months ago there remains some fluid two years on. Do you have regular scans? I hope that you get to see the Ophthalmologist soon but in the meantime you could get a hospital grade scan at Specsavers for £10.
Morning. I'm on my 3rd month of Hydroxychloroquine and before the hospital prescribed, I had all the necessary tests recommended by NICE completed at my optician. They are all standard tests that I've been having since being a contact lense wearer. The optician grumbled under her breath that she was fed up with doing the "hospital's" job for them. I pointed out to her that she didn't have to do them and I would wait for an eye hospital appointment, so she became less grumpy. I spoke to my Rheumatology Nurse and relayed my experience to her and she said that it is unlikely I would not be recommended for an eye check up with the hospital until I had been on Hydroxychloroquine for 5 years. My optician is very good, but I did see? (Sorry) the "grumpy" one of the practice, but then again, it costs me £11.00 a month and thousands of pounds and numerous recommendations from me over the years as I nicely and I did, really nicely, mentioned to her. My optician also recommended me to the dry eye optician within my practice too, that's the part to be worried about apparently with Lupus and my eyes are already suffering dryness. I was recommended day time drops and night time drops to help with that. So, I have digressed..my optician has changed my check ups to annually now which I had no trouble getting at all when I told her I had Lupus, so annual check ups seem to be the best thing you can ask for if you are already wearing glasses and maybe if not, register at an optician. The eye test will cost you money, but you can apply for exemptions as I have to with my brother who is on benefits because of his cognitive cerebral palsy. I'm not sure if any of the above has helped at all, but I'm worried that you will wait for tests from the hospital, when you could find an optician that maybe able to do them for you, but of course, at a price. 😠
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