Hi guys, newbie here!! hope you are all well.
Hydroxychloroquine question, I have just been diagnosed in the past week with SLE and put on hydroxy.
Has anyone experienced any eye related side effects? And if so, how soon after starting the treatment did you see any changes?
Thanks so much
Hi ilovepuppies88, welcome to the site, can’t help with your question as I haven’t had any side effects but I was told by rheumatologist to get eyes checked at the beginning of treatment and then yearly after that. I think it’s changed slightly now and you should get a referral to eye clinic ( can never remember proper name! Opthingy 😂) the only side effects that I was told to look out for was by looking at a macular grid and seeing if any of the lines were wavy or broken. Obviously if your eyes hurt or headaches or in doubt check with GP.
Hi Chris21,
Thank you so much for your response, really appreciate it and I will ask my GP about the refferal to the opthingy lol. The maculr grid tests sound good, and will do that too. Appreciate it!
Thanks again!! Have a great weekend
I’ve only just started hydroxy myself 3 weeks ago, so still waiting for full effectiveness which my rheumy said could be up to 8 weeks. However, no changes nor side effects noticed yet.
Like Chris 21, I got a full eye test prior to starting, and I’ve been told to get re-tested in another 12 months. All the best with it, hope you get some relief!
Hi musicalfurbaby,
Thank you so much for responding, appreciate it. I'll get the eye test done and monitor for any changes. Can I ask what your daily dosage of hydroxy is please? All the best luck too. Thanks again! Hope
You are welcome—I’m on 200mg daily. Take care x
Welcome to the forum ilovepuppies. You've had good advice from chris re eyes and hydroxy. I can add that if you go to Specsavers opticians you can have the OCT test for £10 that looks at your eyes indepth the way the hospital would. If you go now as you've just started hydroxy, it will be a baseline result that can be compared in subsequent visits. Just a thought as the hospitals don't always do it because of covid.
Also what dose of hydroxy have they started you on?. if you get side effects it might be the particular brand of hydroxy as they do vary. I could only tolerate zentiva and blackrock.
There's a lot to think about when newly diagnosed so i hope you enjoy the forum, ask away and you feel better soon. It can take awhile to get the right combo of drugs working and hydroxy can take up to 6-8 weeks i think to fully kick in.
Had you been ill a long time before the diagnosis or has it all been quick?.
Keep well and safe as possible. Xx
Hi Misty14,
Thanks so much for your advice. I will have the eye test done this week, your right it will allow me to see if anything has changed and compare, hopefully that's not the case!! I've been suffering from around January, but the horrid pains only started in June and I've just been diagnosed a week ago, so glad and relieved that you guys are here, it's so nice to have that support and know that your not alone in this. Have you been diagnosed a while ago or quite recent too? I've been given a mix of brands, zentiva and Bristol. I have floaters in my eyes and get flashes, so when I read about the eye side effect that really scared me, thank you again for getting back to me xx
Hi i love puppies, ive just been told Boots do the OCT test at no extra charge so you might like to go to them. Good luck for when you go and hope it goes well. The reassurance will do you so much good. You've been diagnosed with lupus quickly. Its taken years for me to get one and a long road!.
Keep us posted how you get on and i hope you feel better soon. Xx
Hi, boots do the extra test as part of their normal eyes checks so you don't pay anything other than the normal eye test charge.
Hi pattypatchwork, thanks for the helpful info about boots also doing the test. I didnt know that so thanx for sharing. Thats really good that they do it at no extra charge!. Keep safeXx
If you experience eye issues it is already too late for treatment. The way you manage your risk of blindness is to take plaquenil toxicity test each year and catch any changes in the eye BEFORE any symptoms appear. Im taking hydroxy for almost 15 years so I do the test every 6 mo because after taking it for 10 and more years your risk is a bit higher. Risk is very small the first 5 years then slowly increases the more years you are on it. I never had any issues so far. Hydroxy is the least toxic medication of all lupus meds. Did you do the hydroxyqloroqine toxicity test or any eye test before starting the medicine?
Hi tanitani,
Thanks for your reply. It's good to hear you haven't had bad side effects and you've taken it for so long, makes me feel a bit at ease about it. My concern is I already have things going on with my eyes, and having read about hydroxy if freaked me out and so I want to make sure I'm really cautious. I will ask what my other options are when I see my rheumatologist. I will also get my eye test done this week, and if I'm told to take it I will do regular tests and monitor my eyes . Thank you for the advice
Good plan. The issue that hydroxy makes is mostly on retina then cornea, and ciliary body. I believe the risk is minimal before 5 years but absolutely you need to check each year for retinal toxicity (please remember this is not a regular eye test. It has to be a specific hydroxyqloroqinine toxicity test. So you need to ENSURE that's what they are checking as it is not common for people to do this test.)
Hi, I was on Hydroxychloroquine for years but had to stop taking it as it caused macular degeneration. All the alternatives I have had bad side effects so am now on steroids.
Hi Jolevans,
Thank you. I will ask my rheumatologist what are the alternatives if I can't take hydroxy. Appreciate your response, thanks again!
Welcome to the forum. I’m a relative newbie too. This forum and the amazing people on it will be the best support you can get. They are amazing. They have helped me deal with a rude reluctant GP, sort out enough confidence to insist on GP refused pain relief, apply for PIP and advice on the interview. If I don’t know anything I ask here and my ignorance is never mocked. I take 400 Hydroxychloroquine daily. When I started I had a proper public info leaflet from the rheumatologist explaining the drug. However, I was never told to go to the optician or made an appointment for the hospital. I thought that as I had had a test 6 months before that would be fine. The leaflet was concerned with eyesight after 10 years. After about 6 months my eyesight had deteriorated so a check was due anyway. New glasses, and ones for driving which I hadn’t had. 6 months later I couldn’t see properly again so went for retest being told I’d have to pay for the test if there was no deterioration. Eyes were worse again but no retinal degeneration. No charge for test but glasses prescription change could wait if I wanted. So it can’t have been that bad. I had laser surgery that went a bit wrong years ago so it’s probably to do with that plus I have Sjogrens so eyes are really dry. The best advice I had here was to write all your questions down before you see the GP or rheumatologist and go through each one with them. Otherwise you come out having forgotten to ask them something worrying you. Good luck, and again, welcome. 🌹
Hi browenlady,
Thank you. I am so glad to have joined this forum, already feel a little more at ease with the diagnosis having you guys here, I dont feel so alone, although the medication really scared me etc. It's a little scary that your vision deteriorated but like you've mentioned it can be other factors too. I'm pleased to hear you are OK. I wear glasses too and without them I'm lost!! Thanks for the advice, I will make a note of things I am concerned about and ask away when I see my rheumatologist. Xx
Been on hydroxy on & off for over 20 years now. I have never had any eye issues related to hydroxy (thankfully!) and regularly get them checked.
My eyes are extremely sensitive (I also have Sjogren's) & I suffer corneal abrasions often due to this, hence I am very wary of my eyes & if I notice anything that I think isn't quite right, I get my arse to the opticians. Rheumy also makes sure I have an intensive eye exam at the hospital every 5 years (not 100% sure if this is just due to the hydroxy or if it's because of the Sjogren's as well).
Floaters in the eye are common, even in people with no health issues whatsoever (obviously if they have suddenly appeared or they have increased in the amount, get them checked out). Blurred vision can occur when you first start hydroxy (if I remember correctly) but this should settle down.
What I was told to look out for:
If you feel like your central vision is getting blurred, if you lose the ability to see a digital clock, if you lose colour vision—if reds look kind of washed out—or if you have trouble seeing at night: Those are early signs that you might be developing Plaquenil retinopathy.
Hi sher78,
Thanks so much for your message!!
It has made me feel even more better with your information and the fact that you have been on it for a long time and your doing OK with your vision, and overall glad you are. I am seeing my rheumatologist tomorrow so will take all the advice and information that everyone has given me on here and ask away tomorrow. You guys are so lovely. thanks so much xx
Hi, I had issues with my left eye within 12 weeks of starting hydroxy and was taken off it for a couple of weeks. The symptoms I experienced was similar to double vision and found reading anything awkward. It was apparently caused by the eye becoming extremely dry due to the medication. I'm back on hydroxy and use eye drops especially for dry eyes when it happens. There is no set time of day or task which makes it happen so I have eye drops on me at all times . My eye also feels uncomfortable when it happens. The only way I can describe it is" being aware that I have an eye"!
Hi Patty, thanks for your message.
Oh wow, well I am glad to hear your eyes are fine now! And you have found a solution. I will keep an eye on any changes if I continue on hydroxy, which likely might be the case but it's good to know ahead of time what things can pop up and what to look out for. Thank you again appreciate it
Hi, I’ve been on hydroxychloroquine for over ten years and only just had an eye test through rheumatology department. No sign of problems but my optician has been testing for a while already; prompting me to ask clinic about regular testing. Different areas have been slow to take up the eye testing requirements Inunderstand. Hopefully I’m now on regular testing.
Hi sotonbee, thanks for your message. Pleased to know you've had no problems with your eyes. I will get my eye test done this week to sort of have a baseline and then yearly. Thanks again appreciate your reply and glad your all ok 
Hi,
I was on hydroxychloroquine for over 10 years and it became a good friend! I was more energised and it gave me real stability for the time I was on it, I felt generally well most of the time. At the ten year point I was made to have a series of eye tests, fortunately my friend is an eye surgeon and she did them for me. I have the start of macular degeneration caused by the hydroxy and had to stop instantly. Apparently the damage can be reversed if you stop and I’m due to go back soon. It was great for me but all I would say it make sure you go to the regular eye checks as I don’t! Good luck
Hi budRick, thank you for your message.
I am glad to hear you've had no problems for so many years and that your eye surgeon friend has spotted it as soon as, the fact they said it can be reversed its such a relief as I've read too much rubbish saying it can't, I guess if anyone of us notice any slight changes we'll get it checked out straight away I'm glad to hear your all well. I will definitely be doing regular eye checks, I'm too paranoid about my eyes not too lol. Thanks again for your reply
Hi - No side effects from the years I was taking it.
I was sent for thorough eye tests at the hospital when a rheumatologist stopped the med as Lupus was inactive. No such tests had been done so she was quick to organise them and all was normal, no eye damage at all.
The optician I go to (Specsavers) also did a shortened version in my last sight test this year and all is well at the backs of my eyes. I gather its rare for serious problems to show. Good luck xxx
Hi Chris, thanks for your message.
Thank you so much, what a relief to hear so many of you have been OK with taking hydroxy no serious side effects with eyes! It's calmed me down quite a bit so thank you, hearing everyone's stories and I'm pleased to hear yours has been good with your eyes too and hope overall all health. Thanks again, and all the best xx
Glad to help xx🙂
Hello Ilovepuppies88. I’ve been on Hydroxy For 5 years. I get tested every year. Due to Covid I have not had this years exam yet.
But so far, no problems. I take the old fashioned dose of 400 mg a day. 200 mg
Morning and 200 mg night. I’m taking more than my weight amount of 300 mg. I’m better on this dose and pray It will be sustainable. Good luck! Titters
Hi titters, thanks for your message.
Super glad you've had no problems and it's all been OK, it's really nice to hear that. I've been put on initially on 400mg but it's been changed to 200mg now, the fact that your on 400mg and your all good im really happy to hear, might dosage could increase too if needed but I guess we shall see. I'm glad to hear your well, it will be sustainable im sure of it! All the best x
Hi. I have been on Plaquenil (Hydroxycloroquine) 400mg for 19 years now. I go for an eye exam every 6 months. We do a Visual Field (where you look into a box like thing where little red dots flash and you have to click a mouse whenever you see such a flash). For the last few years, I have also been getting my OCT exam done (here in Canada it costs 75 dollars). I have had NO direct side effects from the medicine. I do have other unrelated eye issues but I am told that are from an injury to the eye when I was a kid.
So, in short, while plaquenil related side-effects are possible they are rare. HOWEVER, it is absolutely crucial that you make the twice a year or AT LEAST yearly checkup part of your life for as long as you are on plaquenil. From what my opthamologist tells me that if damage does occur it is typically irresversible so it is important to get regular eye checkups.
P.S. On the lighter side, when Covid hit and Mr Trump thought Hydroxycloroquine was going to be the savior, it was the first time I had actually wished that he was right about something. Unfortunately, he was not.
Hi nanaeem, thanks for your message.
I am pleased to hear you have had no issues at all, it's really reassuring, a lot of you've had said the same thing so I am hoping this will be the case with me too. The fact that your on 400mg which was my initial dose, makes me think its OK if I'm put back on it. I will definitely have regular eyes checks, knowing myself I wiłl probably do it every 6months just to be on the safe side. Thank you so much for your reply and all the best x
Usually for the first 5 or 10 years you do it yearly and then 6 month afterwards. The point of exams is if you get bad side effect you catch it in time to be reversed. Usually by the time any symptoms appear it is very difficult to reverse the damage and can keep progressing. So vision test someone described above with light and clicking is the key
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