Dry eyes with RA: Hi, I've had RA for 2 years and take... - NRAS

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Dry eyes with RA

TMAblue profile image
19 Replies

Hi, I've had RA for 2 years and take methotrexate and a year ago they added in hydroxychoroquine. My eyes are very dry suddenly. I got eye drops Carmize from the pharmacy and have asked for a call back from hospital helpline today.

I'm a bit concerned about taking hydroxychoroquine now as I know it can start to cause eye damage.

Can anyone advise please?

Thanks.

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19 Replies
Fruitandnutcase profile image
Fruitandnutcase

I’ve been taking hydroxychloroquine since 2015. I had dry eyes for years before that and I really don’t think the hydroxy has made any difference to it.

I also had Graves’ disease in 2012 which I would say affected them.

Hydroxy can affect your eyes. You ought to have had a base line test with OCT before you started taking it. Some hospitals do that - others don’t, I have one done privately every year. I also use an AMSLER chart to keep a check myself. If you Google it you will be able to download a free chart to use at home.

I use preservative free eye drops, my eyes vary a lot. I take Algae based omega 3 DHA capsules for my bones but I discovered that they make a massive difference to my eyes and mean I can reduce the amount of eye drops I need. Anyway, if you use eye drops use them regularly throughout the day - not just morning and evening. Keep using them throughout the day.

You can get eyebags that you heat and that help with dry eyes too. Basically though I haven’t had any problems with hydroxy and I’ve been using 200mcg a day for ten years now but do get an eye test and OCT scan every year.

TMAblue profile image
TMAblue in reply toFruitandnutcase

Thank you for your reply. I was told to get an eye test at the opticians when I started taking hydroxychoroquine but that's all. (No hospital eye checks).I've been using the eye drops for the past few days. I take omega 3 capsules so will continue them.

It's a worry when something new starts happening as my eyes were ok previously.

Thanks for the advice x

Fruitandnutcase profile image
Fruitandnutcase in reply toTMAblue

It would be worth paying to have an OCT scan if you didn’t get one done - that’s the test that shows and damage, sometimes it’s offered along with the test and it’s something that is worth paying the extra for, think Specsavers offer it and Boots appear to have some new sort of test that sounds interesting, not quite sure what it does though.

Titch55 profile image
Titch55

They won't do hospital eye checks until you have been on Hydroxycloroquine for 5 years, you have to go to an optician yearly until then. See macularsociety.org/diagnosi...

My dry eyes began when I started to get RA symptoms(11 years ago), it was not related to starting Hydroxychoroquine. I was prescribed eye drops which I take a minimum of four times a day, sometimes more if I do a lot of screen time. They have been so much more effective than the over the counter drops I was using before. I also take Omega 3 DHA capsules, which made a big difference to the dryness of my eyes (recommended by optician).

TMAblue profile image
TMAblue in reply toTitch55

Thanks for replying. If the eye drops I'm using don't help I'll contact the gp. That's interesting about omega 3 (I take these but not sure if they're the same ones?)

I'm thinking it is caused by having RA although it has only just started recently.

Thanks again.

Fruitandnutcase profile image
Fruitandnutcase in reply toTMAblue

These are the ones that I take, I take them from my bones and then when I ran out and didn’t replace them for a while I realised my eyes were much drier and when I looked carefully I discovered for eyes and brains! No unpleasant fishy taste.

ekopura.com/en-gb/products/...

TMAblue profile image
TMAblue

Thank you.

bpeal1 profile image
bpeal1

I have very dry eyes but don’t take hydroxychloroquine. The doctor who diagnosed my dry eyes (he was our GP but also worked part time in the hospital as an ophthalmologist) told me that the linings of tear ducts are made from a very similar substance to the lining of joints. Therefore it is quite common in people with RA for the immune system to attack the tear duct linings as well as joint linings. He prescribed Hylotear drops for me.

TMAblue profile image
TMAblue in reply tobpeal1

Ah OK, thank you.

Happy5 profile image
Happy5

Was prescribed eye drops by GP on optician's advice. Have you seen an optician? They were able to advise me which drops were best for me.

TMAblue profile image
TMAblue in reply toHappy5

No not yet but might be an idea to do that.

MidWhitgiftian profile image
MidWhitgiftian

Very similar to previous advice/comments, am on Metho. for three years and have dry eye. Use Hycoscan and Hylo' prescribed by Optician.

TMAblue profile image
TMAblue in reply toMidWhitgiftian

Ok thank you. Did it just start after a while? I wasn't having problems last year.

MJSlide1958 profile image
MJSlide1958

You can have a Boots Op Eye check. They are very detailed and will help. And also see your Rheumy. Best route. Good luck

TMAblue profile image
TMAblue in reply toMJSlide1958

Ok thank you.

KaysDad profile image
KaysDad

I started Hydroxychloroquine (after MTX didn't work) and fairly soon developed cataracts in both eyes. Could well be a coincidence, though. Certainly worth asking about your symptoms.

TMAblue profile image
TMAblue in reply toKaysDad

Oh that's awful. It is making me feel reluctant to stay on this for too long.

ABwn profile image
ABwn

Am also on eye drops and I have my eyes checked annually because of hydroxychloroquine. The rheum dept organised this when I was put on hydroxychloroquine many years ago.Good luck.

TMAblue profile image
TMAblue in reply toABwn

Ok thank you. They have just advised me to have yearly checks at the opticians.

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