(Plaquenil) for 8 years. My understanding is that this drug can cause retinopathy. However I have not been offered eye checks for this with an eye doctor. Does anyone know if there is an NHS policy on regular checks for retinopathy for people taking hydroxychloroquine
(Plaquenil)?
I asked my NHS nurse to refer me for this and she said she didn't anything about it and she doesn't understand the relevance for arthritis. However when I explained the problem she said she would talk to my doctor about it and see if I could be referred.
Can anyone else share their experience on this and does anyone know if there is an NHS policy relevant to regular screening for retinopathy for those using hydroxychloroquine(Plaquenil)?
Thank you.
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ma73jon
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Eye tests are recommended since hydroxychloroquine can cause macular degeneration.
I get annual eye specialist appt due to that.
It seems you have had RA treatment far longer than the few months it looked like in a previous post... that counts when deciding on effective alternative DMARD.
I was diagnosed 8 years ago, but was abroad. Came to the UK for marriage in December 2018. I was reluctant to take the methotrexat till 4 months ago because I was concerned about the effects on fertility.
I used to be on hydroxychloroquine although at the time I wasn't in the UK. However, the recommendations were similar to those of NICE for eye screening in HCQ...
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). bnf.nice.org.uk/drug/hydrox...
Basically you just make an appointment with your regular Optometrist if you have your eyes tested, or any you prefer. They'll take a digital retinopathy photo & an OCT scan, most of the high street Opticians have them nowadays, my local Specsavers certainly does. Just let the Optometrist know you take HCQ & they should know the tests you need. There may be a small additional fee for the latter. An annual check should be all you need thereafter if the baseline tests are ok.
HCQ did cause light sensitivity in me so my RD Consultant arranged for me to have my eyes checked by an Opthalmologist in the hospital more regularly, though thankfully nothing other than me needing to wear quality sunglasses in bright light was required which also helped eliminate the headaches it caused.
A general eye test should be enough to monitor you. An optician that takes a photo of your eyes each time and keeps it on record incase of any changes. If there is a problem you would be referred to the eye hospital.
Rheumatologist she said there were new guidelines and that everyone taking it would be called for eye tests at the hospital. She said that it would take sometime to get an appointment through with so many needing to be seen. I’m still waiting 5 months on. In the meantime I’ll just carry on with annual optician checks.
I had 3 tears in my retina after being on hdq. They say it’s not connected but it was to much of a coincidence for me. I stooped immediately. I don’t believe in coincidence
It is really up to you to keep up with yearly appointments with your local optician. Most people will attend every two years, HQ takers every 12 months or earlier if any concerns. The optician will refer you on if necessary.
Hiya my rhumatologist confirmed yesterday new guidelines were for eye tests to be carried out annually at hospital eye department if on hydroxy but this may have been because on drug over 5 years. Suggest you confirm with NRAS.
I would arrange your own eye tests and make sure to have a digital retinal photo annually.
I was on hydroxychloroquine for four years and never given any eye tests by Rheumatology. However I was one of the unlucky ones and did develop chloroquine retinopathy. It was first noticed at a routine eye exam with retinal photo, but it was my first retinal photo, so the optician didn't know whether I'd always had the mark on my macula. At the next test the patch had grown and was also starting in the other eye.
I was referred straight back to the rheumatologist, who scoffed he'd never seen a case in 20 yrs, until he looked at my eye with a magnifying lense. I was then seen at Opthalmology at the hospital where chloroquine retinopathy was confirmed in both eyes. I stopped the tablets and the condition didn't get any worse. I was monitored for 5 years.
I consider myself lucky to have found it before more damage was done to my eyesight. As it is I'm now unable to see the coloured spots numbers in the colour blind book and I get some distortion of lines of text as I'm reading.
Hydroxychloroquine was a good drug for me and eyesight complications are very rare. So I'd say take the drug if it helps you, but make sure you're having a proper annual eye exam with retinal photo somewhere where they store previous photos on a computer, so they can compare the pictures year on year.
I took hydroxychloroquine for 15 years. Although it was reported it could cause eye complication but very rare. I was assured by my Rheumatologist at the time saying he has many patients took it and one of them has taken it for 19 year but there was no eye damage reported. There was no guidelines for eye test then. It is strange that my optician didn’t spot the changes over the years as I have had eye test annually for long and shorted problems. Last year I had signs of blindness on both eyes and was referred to specifically investigate the effect of hydroxychloroquine on my eyes. I stopped taking it since Jan 2019 as retinopathy was found. So far my RA symptoms and blood tests have showed no significant changes. I hope this information helps you to decide what to do next.
You are most welcome ma73jon. I hope you are well.
I would like to update of my eye condition here. I had a recent eye examination by the ophthalmologist who is specialised in Medical Retina, regarding my Hydroxychloroquine retinopathy. She found my condition looks unchanged at the moment after 8 months of stopping the Hydroxychloroquine. I will be having more tests in 8 months' time to monitor any new development.
In the meantime time I am continue to do well with my RA symptoms and my rheumatologist confirms I am in remission. She has reduced the Methotrexate slightly trying to reduce my gastro-intestinal symptoms which I found it has helped a lot.
I hope this information might be of interest and useful to you.
I have an eye appointment next week. My doc won’t prescribe the Planquenil before I have the exam and then I have to have yearly checkups, since blindness is one of the few side effects. I have to get off pred because of osteoporosis, so I am praying my eyes check out OK and I can start Planquenil. Definitely request an eye exam!
I have been on hydroxy for 26 years and have never had a specialist eye test, just the usual ones from an optician. When I queried this with my Gp he said he would look into this and came back with the answer, there is no need for this test. Hope this helps
my optician does thorough checks including field vision and retinal photography but on visiting her this week she has written to my Dr to arrange an appointment with eye clinic ,this is because new guide lines say if on hydrochloquine you should be seen at hospital. Don't know if I'll get one as she said at moment Berkshire doesnt but have this screening, but Oxfordshire does. I'll have to see what comes of it.
I’ve been on it for several years and my eye exam includes the test. My eye doctor said in all the years he has been in business he has only had one patient that started to develops problems and those problems resolved once she was taken off of plaquenil.
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