Hydroxy chloroquine and light sensitivity

[lovemydoggy]

I've been on hydroxy for a few weeks now. Within the last week or so started noticing I'm suddenly very sensitive to light. At first I thought it was just my imagination, but it isn't. When I had my Opthalmology appointment sh said I should be on much less due to my weight. I'm prescribed 400mg. She said something like 250 or so would be the dose I should take. My questions are, would this be a sign of possible eye damage? Can you simply reduce the dose if you have this side effect? I'm really upset because it is helping, both my fatigue and pain. It's been amazing and I keep better. I've messaged my doctor, but she won't be getting back to me right away.

[bubblyalex]

Hello. I am so glad to hear that your pain and fatigue etc have been helped by the med. I’m not on it so can’t answer your question. I wish I could. Have you tried leaving a message for your rheumy/rheumy nurse. They would know better and be able to help you.

[lovemydoggy in reply to bubblyalex]

Yeah, sent a message. I'm just really anxious about it, and who knows when they'll get back to me.

[happytulip]

I take HCQ for lupus 400mg a day. I am severely photosensitive, can't go outside during the daytime in the months from April-October unless it's a low UV index day and I collapse under any light that isn't LED.

I do think that my sensitivity got worse when I started HCQ but if I try to wean myself down to 200mg then my lupus rages out of control.

It's a difficult one to answer because 60-70% of people with Lupus are photosensitive anyway and as you have RD/RA and not Lupus it hard to say if it's the HCQ or not. I'd definitely discuss it with your rheumie team as photosensitivity has a massive impact on your life .

I'm on this site because it has been really useful to get lots of info about DMARDS and Rheumatic Disease and the medication side effects. A friend of mine also has RA so I gain insight in the hope to support her.

There is a charity called eclipse that might offer some input into photosensitivity. If you look into it may drugs can cause photosensitivity, I was quite surprised to find that I am on 3!

Good luck

[Tree6]

Hi there - I have been taking hydroxycloroquine for about 15 years. I now get an annual eye test with a doctor to check there is no damage to the eye. Recently some research suggested that people should lower their dose of HCQ. My rheumatologist does not feel this is something I have to do - I think he felt the guidance was overly cautious. He said if I was concerned I could drop a dose a couple of times a week eg miss the Saturday and/or Sunday evening tablets. If it is controlling your symptoms I would be cautious about chainging anything before you speak to your rheumatologist. I have never experienced photosensitivity from HCQ so can’t comment on that. I think it is something different from the potential eye side effect though? Hope you get some answers soon.

[lovemydoggy in reply to Tree6]

Thanks, me too! I'm hoping photosensitivity is not the bad thing, as you said. I made the mistake of consulting Dr. Google. Almost always a bad call. Pretty sure she'll say I can just lower the dose if it's a concern. I just really need to stay on this.

[RosieA]

Hi, my understanding is that there is a mg / kg weight ratio with HYD. I was initially put on 400mg by someone (not my usual consultant). It caused terrible tummy issues. When I read the blurb I realised I had been prescribed too much for my weight. The dose was reduced to 200mg by the specialist nurse and I have been fine since. Certainly worth a discussion with your specialist team as soon as possible. I have become photosensitive within the last few weeks and am not sure if it my AI disease or the meds. Another discussion to be had with the specialists. Like you I wish to remain on it as I feel it is certainly helping with some of my symptoms. I do so hope you get help soon.

[helixhelix]

I am hugely photosensitive because of the disease, not the drugs. I have secondary sjorgens which is common with RA. I was on hydroxy for 8 years with no change to my eyes.

The retinopathy from hydroxy doesn’t manifest itself as light sensitivity, and presumably your ophthalmologist checked your retinas anyway?

Hydroxy doses can be dependent on weight, so keep chasing your medical team. It’s common to take mixed tablets to reduce below 400mg.

[Creakywrists in reply to helixhelix]

I’ve been on hydroxy for 5 years and 2 years ago my dose was dropped to 600mg over 2 days - 2 tablets one day, 1 the next.

I also have photosensitivity due to RA and probably also due to hydroxy and methotrexate. I don’t go out unless I have long sleeves and sun protection! I’ve had trouble with my eyes but that’s due to steroids not hydroxy, I get my eyes checked annually at the optician.

[Caza]

Hi, I’ve been on Hydroxchloroquine for 8yrs now. I have my eyes tested at the hospital once a yr & once a yr with my own optician. I do have photo sensitivity & need to wear sunglasses outside if sunny. My skin is also affected by the sun, not a bad thing as I always cover up now.

I should be on 200mg for my weight but I take 400mg. If I try to reduce them & a few time’s stupidly stop them ( my doing not the rheumatologist) it’s ended badly. As in all symptoms came back with vengeance. If in doubt always ask your rheumatologist.

[KSIXX2]

Yeah I would absolutely be on top of this! Hydroxy can cause loss of vision. Its pretty high on the list too. Both of my eye doctors (different practice) had a Protocol for people on this. Visit every 6 mths, see eye surgeon once a year. My vision was deteriorating and my RA doc pulled that out immediately.

But I have Sjodgrens disease too that me dry eye disease. Light bothers me almost as much as politics!

[lovemydoggy in reply to KSIXX2]

Politics are making me sick...I think literally. My symptoms dramatically increased with all this chaotic government. Im in the US, so.....enuff said. Anyway, from googling and posting in forums it doesn't seem it's the toxic level for retinopathy damage. Still waiting on response from my rheumatologist. My opthalmologist said my dose should be almost half what I was given. Obviously, rheumatologist didn't prescribe according to recommendation, but both stated eye problems don't happen unless you're on it long term and then chances aren't high, but I've read high doses (which 400 is for me) can cause the problem. Then again it could be a symptom of the disease. PR is the thought right now, but I seem to have some RA type symptoms and just general autoimmune stuff. Seronegative on everything so it's a lot of guesswork on her part. Obviously, eye problems are a huge worry, but so is losing all the benefit I've had so far. I'm so afraid of being taken off the drug. I'm concerned if I contact my opthalmologist she may advise not continuing. It's so difficult. I do seem to get some of my best answers to on this forum. Googling is helpful if I can not freak out, but mostly to help me know what to ask here. Nothing like input from you wonderful people who live it! Thanks to all! ❤️

.

[Bookworm55]

I was on Hydroxychloroquine at 400 for a year and a half and then cut it down to 200 mainly because of gastric side effects. 6 months after this the optician thought he could see some damage to my retina and I was referred to the ophthalmic dept at the hospital. To cut a long story short the consultant there could see slight damage after a detailed scan and immediately took me off hydroxychloroquine . That was in June 2018. I still have 6 monthly eye checks but every other doctor I’ve seen there has said they can only see normal age related damage. Of course the hydroxychloroquine was stopped and the damage could have repaired but I’m not sure what to think esp since even the first doctor said it was unusual to see damage after such a short time .........

[nomoreheels]

I had light sensitivity on HCQ. My Consultant arranged for me to have 3 monthly tests with the Opthalmologist in hospital. All was well each time but I did wear sunglasses to help ease the strain, not easy as I was living in Spain at the time. I only stayed on it a year as it stopped working so well but the headaches, not nice. I've had no lasting effects though my eyesight has changed (due to age according to my brother in law, an optometrist), whereas I've always been myopic I’m now hyperopic. I wouldn’t panic, whilst it is known that HCQ can cause eye problems it's most often related to length of time you’ve taken it, though your Optometrist would have taken steps for you to be referred if she was overly concerned. I do know though that light sensitivity & retinopathy are two quite different things & one doesn't mean you will go on to have more serious issues, if you have regular testing, this is what I was told anyhow,

This is as you know something you need to chat to your Rheumy about. Odd though, I would have thought when considering HCQ for you she'd have checked your weight for your dose. When I started it I would have been about 8 stones & prescribed 200mg twice a day. As far as I know the tablets are only made in 200's so it would be difficult to get an accurate dose if it's as your Optometrist suggests your dose should be 250mg. Anyway, it's for your Rheumy to decide so hopefully she'll return your call soon.

[lovemydoggy in reply to nomoreheels]

Eye doctor got back to me today and thinks it is dry eyes, not hydroxy. She may be right. My eyes have been quite dry recently. I know dry eyes are a common symptom of autoimmune conditions. So I'm trying artificial tears to see if it gets better. Rheumatologist nurse got back to me, but misunderstood my question and thought I meant skin sensitivity.