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this post was submitted on 04 Jan 2024
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Oh wtf this was one of the drugs people used to poison themselves with? I was prescribed this a month ago because the rheumatologist told me is the safest drug for auto immune issues although I still need to take mehtylprednisolone every few months due to spinal inflammation that messes with nerves.
Don't worry, a key part of toxicity is the dosage. If you're following a prescription from an actual doctor instead of taking handfuls of horse medication at the behest of extremist politicians you're fine.
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.
Ivermectin was the horse medication.
It's great if it's used to treat what it was meant to, people started taking it because a few doctors mentioned it might help with COVID without having any proof it did.
The hazards here were related to passing around doses, improper prescriptions from disreputable doctors, and not seeking out actual treatments for covid. If you have certain conditions and medications there can be side effects and interactions that harm health, but that your doctor should have considered. Some people who really needed hydroxychloroquine for legitimate uses like yours had trouble getting it because of shortages due to morons rushing out to get it.
Just like Ivermectin, it has a legitimate use. But snakeoil salesmen peddled both of them as off label Covid miracle cures with zero medical trials, or even an attempt to begin one.
Ivermectin is for deworming. It shouldn't be prescribed outside of the purpose.
Take the recommended dose and you'll be fine, just don't go over because it's easy to OD with.
You might also go blind, but that's a future you problem
Yeah my rheumatologist did mention that to me but he said it takes years and years to start to form and is easy to revert. He just said to get eyes checked every year
It is most certainly not easy to revert. I was on it for 15 years and now have permanent, irreversible damage to my macular. I also can’t take hydroxychloroquine at all anymore because I will go blind.
But my doctors messed up and didn’t checked my eyes for over a decade. Once the usual optician spotted it, it was too late. If you see an ophthalmologist every year, they should spot any issue before it’s too late.
Yeah sorry that's what I meant, catching it before it's too late. I'm really really sorry you're experiencing this, that is terrible.
Thanks. I was angry for ages, now it’s just another lupus gift - nothing to be done except get on with it. Wishing you many more good days than bad!
Same goes to you!
If you take a look at the more dangerous collateral effects... and correlate with the more dangerous COVID effects, you'll have a surprise.
By itself, the drug is pretty safe.