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this post was submitted on 04 Jan 2024
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I followed my doctors advice (400mg daily for 15 years) and got retinol toxicity anyway. Now I have permanent damage to my macular, can’t take hydroxychloroquine anymore and my lupus is raging. It’s a fantastic drug, and blindness is a very very rare side effect, but for god’s sake insist on being monitored by an ophthalmologist. Current UK recommendations are an eye check before starting the medication, repeated after 5 years and then every year after that. I should have been checked 10 times in 15 years, I was checked twice.
Why weren't you getting an eye exam every year as a standard?
I'm in the US and once a year is pretty standard. Why would you only go to the eye doctor twice in 15 years? Do you not have regular eye exams as the norm?
TL;DR: most people in the UK don’t ever see an eye doctor until they get cataracts or similar in old age. Yearly opticians appointments are normal for people who need glasses - but the tests aren’t to the standard needed for those on hydroxychloroquine. I should have seen an ophthalmologist at least 11 times in the last 15 years instead of twice, but I “fell through the gaps”.
In the UK regular “eye exams” are called eye tests and are not covered by the NHS for most adults (unless you’re very poor and even then it’s still not free, you just get a voucher towards your glasses). Eye tests are done by optometrists (not doctors) mainly in corporate owned businesses like Boots or Vision express. I’ve been short sighted since childhood and have had eye tests done at boots at least every other year, if not yearly. Until last year, there was nothing to report.
But eye tests done at the opticians are not the same as in-depth as the tests an ophthalmologist at an eye hospital does. Until very recently (post pandemic) Boots didn’t have the capability to do OCT scans. Even when they got the capability, they wanted to charge an extra £25 for the privilege. In my case the waved the £25 fee (handy, I couldn’t afford it) because they could see there was a problem. They were meant to refer me to the eye hospital for urgent review but they “lost” my referral and didn’t inform my doctor of the problem. I continued taking hydroxychloroquine for 7 months because of their error, with the toxicity ever increasing. Eventually I was seen at the eye hospital and the damage was confirmed. I’m now seen there every 4 months. The can’t reverse the damage and it may continue to worsen even though I no longer take hydroxychloroquine.
As you pointed out, I should have been referred by my rheumatologist to an ophthalmologist at the eye hospital for yearly checks after my 5th year of taking hydroxychloroquine. For whatever reason I wasn’t. They blamed the pandemic in part, but they missed 10 years, it’s not all Covid’s fault. They did apologise unreservedly though.
So I didn’t know I needed to be under the care of the eye hospital, no one involved in my care including consultants, nurses, GP, pharmacists or my opticians told me I should be under the care of the eye hospital, or spotted the fact no one was monitoring me. When I first told my consultant he couldn’t believe it was down to the hydroxychloroquine until it was confirmed, because in 35 years of practice he’s never seen hydroxychloroquine toxicity before.
So I slipped through a crack. I considered suing both boots and the NHS for medical negligence, but it felt wrong. Instead I settled for an apology and a new warning that pops up for every patient on long term hydroxychloroquine when their medical records are accessed. Hopefully that will prevent anyone else from “falling through the cracks” again.