Hi
I’ve now been taking hydroxychloroquine for 5 years. I’ve managed to get my optician to do yearly eye test but I’m wondering should I be asking Rhumatology to refer us to ophthalmology? For further testing now? Ive read some stuff saying we should have been seen when starting taking?? Then yearly from 5 years ??? Anyone know guidance we should be following?
Thanks
HI it use to be that we tested for hydroxychloroquine toxicity every 6 months - a few years back it was changed to once a years for your glaucoma and cataract's as it can cause it to become advanced sooner . I have been on Hydroxy for 8 years now . so every years i get 5 or 6 tests done and included is the hydroxy test . Hope this is helpful - I take 200 Mg twice a day. It is a good med , but it does take time to work and to build up to the full dosage . It took 6 months for me .
Doesn't matter who you see it's important that whoever you see does "plaquanil toxicity test". You can't perform any random eye test 😉
Hi Gizmok9 like yourself I’m on hydroxychloroquine and have been for since 2007. I have always had annual eye test done at my optometrist and paid for the additional retina tests. However 2 yrs ago my rheumatology specialist said I need to have my eyes tested at the hospital as I had been on the medication for such a long time.
No appointment came when I saw my specialist again 8 months later I mentioned that an appointment hadn’t come and he said he would chase it up. As with most six monthly appointments they get cancelled and it can be up to 10/ 11 months before the next,as my next one was, and my specialist had left in the interim.
On my next visit with a new specialist I mentioned about the eye test and was told there is now no funding for this any longer. But to continue with the testing at my optometrist and pay for the additional tests available.
This is the third time in the last five years that rheumatology have requested either tests or treatment for myself and it’s been refused through lack of funding or it isn’t cost effective.
In addition to this I now have to pay for my sunscreen which I use every day as this was removed from the prescribing list last year.
Their has been a steady erosion of of our entitlement from the NHS over the last few years which is very sad, I am fortunate that I can pay for these things, but what if you can’t.
Hi - I've taken hydroxy for 15 years, since 2005 and have gone to Specsavers from the word go after advice from the hospital and a diagnosis of mild SLE.
Last december I saw a new rheumatologist who said all was stable with my immune system and had been for some time, she stopped the hydroxy. She also asked if I'd been to opthalmology in all those years, I haven't I've relied on the opticians. So a referral had me in the hospitals eye clinic a week ago.
Today I've had a letter to say there is no evidence of hydroxy toxicity 
and because I've taken it for over 5 years they want to see me again in a year. Not sure thats necessary as I'm not taking the drug now.
If you're concerned as I was when I read about the side efects it has, ask for the test to be done. I think these days its once in the first year and then every 5 years but I'm not sure.
Thanks had found this info but it’s not clear what they should follow x
Thanks for comments, Luckily I’m in Scotland so eye tests are free I had to change to specksavers to get yearly as first opticians said every 2 years and to comeback if a problem! My dad has glaucoma and is waiting for surgery, so did my gran. So thought would query it. I’ve eye test next week and Rhumatology the following so will see what each of them say 🤞
Hi, I have just had my first test and I have been on them for 26 years! thank fully I am ok. Talk to your gp to refer you, it is very important xx
An optician is a dispenser of eyeglasses and contact lenses. I am not sure an optician is the right person. I was referred to, first, an opthamologist, and then, to a retinal specialist. Finally, I had a field vision test. All of this was when I was first diagnosed, to get a baseline.
I’ve been going to Specsavers every year since 2016 when I got put on hydroxychloroquine, my daughter got put on it 2 years ago, both of us have been told this year by the same rheumatologist that we have to have an appt with opthalmist and he will refer us, apparently this is the new guidelines that have come out recently.
Been on it for 12 yrs. Local optician checks me annually but rheumy has twice said I need hospital eye check. Had 2 but each time discharged as they haven't time & resources to see everyone, according to ophthalmologist I saw a few months ago. Thankfully my eyes are holding up and now on a lower dose.
Hi
The standard time frame for a hospital check is every 5 years, had this confirmed the other month by my local nhs trust.
The hospital checks are apparently different to a standard eye test and therefore you need to push for your appointment.
Your Rheumatologist can refer you.... may take a little time to get an appointment but better to be safe than sorry.
Xxx
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