Methotrexate - Ocular side effects?

[Robejo]

Hi,

I've been taking 15mg weekly MTX for the last 3 years for sero-negative psoriatic-like arthritis in my left knee. My bloodtests have always been normal. The only side-effects I have suffered with are brain fog, headaches / mild nausea, interrupted (and often quite bizarre) sleep. My consultant never seems to be concerned with those side effects and I've learnt to just deal with it for the 48hrs after taking it. The methotrexate has kept the swelling completely at bay and has enabled me to stay fit physically (even running etc) - so I am very fortunate in that respect.

My regular eye check up at the optician in November last year led to a refferal to an opthalmologist for suspected (normal tension) Glaucoma. The OTC scan showed 'red' (<1% probability) for thinning of the neuroretinal rim. The opthalmologist was happy with all my other readings, but didn't like the indicated thinning, and I now need to be monitored for the next 18months to check for progression.

I have been using my bad friend Google and have found disturbing explanations for the OTC scan results which weren't mentioned by the opthalmologist, but are clearly indicated with statistical significance for findings of various optic neuropathies.

My eyes were previously of excellent health - so I'm really confused where this has come from and I'm wondering if methotrexate might be having some sort of neurotoxic effect (especially given the neurological side effects I have been experiencing since day 1 of treatment).

Does anyone have any experience of ocular side effects from methotrexate? There is no suggestion it is the arthritis itself spreading to the eyes, but the side effect 'book' that comes with MTX and online searches do show some neurotoxic effects are possible.

Not sure what my next steps will be, but right now i hated taking my MTX today, and I am sat here waiting for the brain fog to descend and to start panicking about it eating away at the nerves and fibres in my eyes. I doubt my rheumatologist and the opthalmologist would communicate with each other on this.

would love to hear from anyone who has any experience to share

[Blocksetter]

The opthalmologist (or orthoptist) is the person to speak to here if you have worries. In the UK, doctor training only includes 3 weeks on eyes (or so I've been told). The opthalmologist will have spent an extra year of study specifically on the eye and the orthoptist a full three years of eye study. My doctor friend told me she asks to see an ACP (Advanced Clinical Practitioner) if she has a health issue that's a bit unusual, which in your case is likely to be an orthoptist with several years experience.

[Robejo in reply to Blocksetter]

Thank you for the advice - I'll be booking in another appointment in a few months, and from what I hear not alot will be going on in terms of progression between now and then. So will try and take a chill pill (and some eye health supplements :-))

[cyberbarn]

As I said on another thread, don't forget Hickam's Dictum: Patients can have as many diseases as they damn well please!

My ex has a rare form of glaucoma. Other than being short sighted, his eyes were fine until suddenly they weren't. He has no rheumatological conditions and was on no medication when it happened. It was sudden and came out of the blue.

Things happen. Humans like to find patterns in things, but patterns are not always causal in nature. And many things can have the same symptom or outcome.

And a quick look at the peer reviewed papers shows that not only does MTX not have glaucoma as a side effect but it can actually improve glaucoma in some patients.

It would be better to use Google Scholar rather than regular Google, and do not pay any attention to the AI summaries that Google does, they are often wrong. Large language models of AI are built to make answers sound plausible, not to make sure they are correct.

So take that MTX, battle through the brain fog, and discuss this with your Rheumatologist, even if they won't talk to the opthalmologist. And if the ophthalmologist is monitoring you, go armed with questions next time on a nice big piece of paper and don't leave until you can tick each one that has been answered.

It is natural to want to know what is causing a new symptom, but there is a lot of uncertainty in medicine still. Sometimes there will be a genetic cause that we have no idea about yet, sometimes it is another disease causing it. But just because two things have happened at the same time doesn't mean to say that one caused the other.

In fact, if you want to have a bit of a laugh to lift your mood while you are waiting for the brain fog to dissipate, trying exploring this website on spurious correlations. Now with added AI explanations! (which are not true but are really funny!)

tylervigen.com/spurious-cor...

[Robejo]

Thanks so much for the excellent advice; it really does make a great deal of sense. In the grand scheme of things, given I'm pushing 50 (and so much medical advice seems to pivot on age v 50 as if stuff is just expected to go wrong after 50), I guess I start to take life as it comes from now and just do what I can to live heathily. I love the correl v causation website. The AI explain for # Disney releases v. # Car thefts is particularly pleasing. I'll be delving into that website further today!

[whitedog]

Hi

I wouldn't be too quick to blame the MTX for Glaucoma.

I stuck the stuff for 10 years but Glaucoma came first for me - about 7 years before RA. And the cause of Glaucoma was an unusual and complex uveitis disease. And the cause of that - no one seems to know for sure - possibly viral. I've seen rubella mentioned.

Now I have dry eyes as well plus increased RA flare ups and other issues so I imagine some of it is connected.

Have you joined the Glaucoma community?

[Robejo in reply to whitedog]

Thank you for the reply. I'll def take a look into the glaucoma community

[trexhater]

I know Plaquenil can cause ocular problems but not heard of methotrexate causing it. But then everyone reacts differently. Rheumos are notorious for ignoring side effects. I agree with the others, consult with an opthamologist/orthoptist

[JFlay]

I was on MTX for the first 6 months after RA diagnosis, and during that time quite a large floater appeared in my left eye. I was told no, nothing to do with MTX 🤷‍♀️ Then due to gut issues, I switched to hydroxychloroquine and now 5 years later I'm waiting for an opthalmology appointment to check for possible eye toxicity 🙄 so have had to come off that as well... hey ho.

[smilelines]

Did they ask you to use eye drops? I use them as I have increased cupping in the back of one of my eyes so the doctor says the drops are precautionary to keep the eye pressures down. If they didn't prescribe you any drops they probably are not too worried. I have been monitored for normal tension glaucoma for 10 years. Everything has been stable. My rheumatologist had me on methotrexate while knowing about my eyes so she must not have thought it was an issue. I hope this helps alleviate some of your worries.

[Robejo]

Thanks for sharing - how do you get on with the eye drops? (I appreciate I'm drifting off topic for an RA forum, will stop after this and reroute). The issue I got referred for was the OCT scan result indicating lots of 'red' (<1% probability) outcomes which suggests severe retinal thinning. Other markers e.g. cupping, pressure etc were within normal bounds. The opthalmologist suggested an 18mth monitoring period to see whether the thinning shows signs of worsening or whether it is 'just me'. So no drops yet, although I think he would have prescribed if had pushed. In your situation, you haven't actually been diagnosed with Glaucoma, and you've not had to inform the DVLA etc? On the MTX front, it does seem unlikely it is the culprit, but it does interfere with blood cell counts etc (my red blood cell count is relatively low and mtx lowers it as picked up by monitoring bloodtests. Reduced bloodflow to the eye can cause some problems I hear. Anyhow, seem unlikely MTX to blame. Hopefully I was just born with a thin retina!