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Hello Diane :)

Your sister is correct if you yourself are over 40.


The risk of retinopathy is so low that eye tests are not prescribed in the UK. There may of course be a cost v risk calculation in this NHS policy. (One estimate is that $20 million, very roughly about £10 million, is spent on retinal testing in the USA of patients taking HCQ
Dr Wallace, one of the foremost US lupus experts reports that one extensive study concluded there was "no documented case .... in patients
taking the recommended doses for less than 6 years and had normal renal function "
The maximum recommended dose is 6.5mgs per kilo, roughly 3 mgs per lb, of ideal body weight. So 200 mgs a day represents maximum for an ideal weight of up to 70 lbs or 5 stones so most likely you are not at your maximum.
In fact I'd be wondering why the dose is so low unless this is only a short term starting dose with the idea of increasing within a few weeks. The more usual therapeutic dose is 400 mgs a day which might then be reduced to 200mgs a day maintenance dose.

The same study noted that only 19 cases of confirmed HCQ retinopathy had been reported in the literature between 1957 and 2003.
" All had abnormal renal function, had taken the drug for more than 6 years or were dosed using their actual body weight as opposed to their ideal body weight"
(Dubois p 1162)

I am not a doctor but I would advise getting your eyes tested for free re the glaucoma as often as possible, at least once a year I suppose, mention that you are taking the HCQ and ask for the macular visual field to be thrown in. An optometrist is just fine for this in the UK. I go to my local SpecSavers.
This is considering that to go to an ophthalmologist in the UK you need a GP's referral and will have a wait of several months, unless you already have serious vision problems.
I try to get one every 6 months or so but that's because I have been at max doses of either HCQ or chloroquine for many years. I get an annual free because I am ancient and if I can't swing an extra one I would pay for it. In your case getting one every six months would seem unnecessary but it's a good idea to have an idea of the sorts of changes that might be signs of retinopathy. Not all eye problems are major: some are not significant and not retinal in nature. But what's the point of taking any risks unless you have absolutely no choice about it.

The situation in the USA is different: doctors fear liability suits and the appropriate tests might only be available at the ophthalmo's who can be easily accessed without referral and the insurance pays for the tests. At least that was my experience.

I would pay for a baseline if I couldn't get it free; within a few weeks of starting is fine.

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