eyes ! 👀

[Cbedz3]

Hi so after 3.5 years of being ignored , pushed from pillar to post I got my diagnosis in February and started on methotrexate and given the so called 8-12 weeks minimum time frame for any noticeable difference. However the amount of conflicting information and advice I’ve received is crazy ! The medication has done absolutely nothing in 6 weeks but prepared to give it longer , however it’s had serious effect on my eyes . Well that’s what I thought but according to my nurse and GP it is not the methotrexate. So I get referred to an eye specialist and the first thing she asks me is what medication am I on for my RA . I tell her and she says well that can definitely affect your eyes ! So who is wrong and who is right !?

[Runrig01]

I would agree with your nurse and GP. The only eye issue listed in the side effects for MTX is photosensitivity. This is from the BNF, which is the “bible” for checking side effects and interactions I should add that steroids used commonly for RA can cause eye issues

MTX - eyes

[Blackberrywine]

If you feel that the drug has caused issues with your eyes I'd go with that personally. I've been fobbed off so many times I tend to go with my own experiences these days. But that's me! If a certain condition disappears after stopping a particular drug it's a no brainer. However, you must do what is right for you.

[Cbedz3 in reply to Blackberrywine]

Absolutely! I knew 4 years ago something wasn’t right with me and I almost gave up as it was so tiresome getting fobbed off constantly and was more effort to keep making appointments and keep wasting my time then it was just to deal with pain sometimes

[ruth_p]

You really need to get advice from the rheumatology department as they know the most about your medication and condition. The RA itself can cause problems with your eyes and if you went a while before getting a diagnosis that’s also something the eye specialist should know about. You might need the rheumatologist and eye specialist to consult with each other to work out what is causing the eye problems.

[KittyJ]

I’ve never in 25 years of mtx been told it can cause serious eye problems ( other than the photosensitivity already said by runrig) what is the eye problem it has caused please as I think people would like to know, even if it’s rare?

[Cbedz3]

hi everyone thanks . The problem i have is this is the same GP that missed my symptoms nearly 4 years ago and told me all I had was an over worked my body and i was doing to much as I was an avid gym goer and general fitness enthusiast and I need to rest. I was told this 3 times , referred to 2 physios who also missed it. I then went back over a year later due to the pain , finally got a leading physio who was great and refereed me to rheumatology after I spent a day in hospital not being able to walk . The GP then told me he’s doing the referral as he wants rule out rheumatoid as doesn’t believe it’s that . 10 mins with a specialist and diagnosis given and told me it’s clear as day and you’ve clearly had it for a while and it’s progressing 🤬 Any how , so can see how I maybe sceptical of this particular GP but the common reaction seems to be that it’s unlikely the mtx and more the rheumatoid . it was just in sink with me starting the mtx so I had my concerns. It’s all the symptoms related to severe dry eye which is what I was told I have but also told it could be a combination of the mtx as well . Thanks for all your time to reply

[KittyJ in reply to Cbedz3]

It’s quite a common story here to be fobbed off by GP’s saying it’s not RA sadly 😔

Has anyone mentioned Sjögrens to you? Unfortunately once you have one autoimmune condition then you are more likely to get others join in.

[StriatedCaracara in reply to Cbedz3]

On Lupus UK forum I posted this. I have had the dry eye issue since having covid in March 2020, and think it might even be linked to that.

healthunlocked.com/lupusuk/...

[Doggo2]

Hi Cbedz3

Just wanted to say that my eyes were also terrible last year after having been told I had RA.

My Rheumatologist said my eyes would settle once the inflammation was under control, which they did. I feel now though I suffer from dry eyes and constantly use drops.

Hope you settle soon and your eyes respond.

[whitedog]

Could it be that as your RA progresses, it has also started affecting your eyes?

With me, an eye condition came first - a uveitis/iritis disease in one eye that generally brings with it a whole collection of baggage incl glaucoma. RA was diagnosed several years later. But while the RA seemed to be under control for quite a few years, the eye is always up to something and irritates constantly, even with steroids every day.

Now I also have quite severe dry eye in both. And the RA is back with a vengeance so hoping for new treatment soon.

Rheumatology have referred me to an iritis clinic next week. First time ever as I've always been treated at a glaucoma clinic before so maybe they're finally looking for something that links both conditions. Or a new condition.

I feel your frustration as I'm totally worn down with it all now.

[KASHMIRI1]

I found methotrexate took about 12 weeks to make a difference.

[AgedCrone]

Give it time…I think 12/18 wks before you need to think of changing to a different Dmard.

I think I would believe your rheumy team.It’s really quite unlikely an ophthalmologist would have off the cuff in depth knowledge of Methotrexate.Did you ask her to expand on that reply?

I took it for 7 years with no eye problems & tbh I don’t remember any of the many contributors here ever saying their eyes had any detrimental symptoms.

Ask that eye doctor what Mtx is doing to your eyes & what she suggests you do about it…then ask your rheumy again.

[KittyJ]

just to add that 6 weeks is no time at all in RA world for drugs to work so persevere and hopefully you will start to see some improvement soon 🤞🏻

[MadisonKennedy]

Methotrexate for me, has never truly helped with my RA... but I do remember it took at least three months to actually kick in, and even then it wasn't much help.

I had to switch to Anti-TNF Alpha drug because of that; after a year being on Methotrexate, my chronic pain was still unmanageable.

But while I was on Methotrexate, my eyes were affected as follows : blurred vision, and conjunctivitis. It is actually listed in the side effects, so it's like a known thing.

There are others things listed regarding Methotrexate's effect on eyes : ocular toxicities consist of peri-orbital edema, ocular pain, blurred vision, photophobia, conjunctivitis, blepharitis, decreased reflex tear secretion and non-arteritic ischemic optic neuropathy. Also, yellowing of the whites of your eyes can happen...

So I don't know, but I would trust your Eye Specialist and the exhaustive list of side effects from Methotrexate that you can find online, or written on the paper with your syringe (inside the box).

[RivieraSun]

I had uveitis early on shortly after being diagnosed with psoriatic arthritis ( not unlike RA) and was referred to Moorfields who prescribed short term Methotrexate to clear the uveitis, at which point rheumatologist got involved and asked Moorfields to let her set the dose so that arthritis could also be treated long term. Uveitis cleared up and arthritis improved until I had to come off the methotrexate 6 months later due to side effects. Uveitis has not returned. Arthritis must have been the cause, surely. Hope this helps you. It's such a confusing illness 🤒