leflunomide/eye monitoring?: UPDATE: I’ve realised... - NRAS

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leflunomide/eye monitoring?

girli1111 profile image
21 Replies

UPDATE: I’ve realised that the eye monitoring is because of my hydroxychloroquine…. Not the methotrexate, and not leflunomide.

hello, I have an appointment today for specialist eye monitoring. This has been done at regular intervals since I started methotrexate, HOWEVER…. I no longer take methotrexate as I’ve recently changed to leflunomide. Does anyone know if the eye monitoring is still done for leflunomide? It’s a private company that arrange the eye thing on behalf of NHS, so I doubt the person doing the monitoring will know. I will also try and contact my rheumatology sept advice line.

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21 Replies
sylvi profile image
sylvi

I am on leflunomide and i am lucky in the fact i have a good optician who will always check my eyes out for me.xxxx

girli1111 profile image
girli1111 in reply to sylvi

Thank you sylvi. So is extra eye monitoring part of the manager of leflunomide do you know?

Boxerlady profile image
Boxerlady

I was told to have extra eye scans for Hydroxychloroquin (I arrange them myself through an optician but my consultant checks that I've had them) but wasn't told to have them for Methotrexate and that has never been mentioned despite starting them both together. Another example of different areas/consultants/different approaches? 🤔

girli1111 profile image
girli1111 in reply to Boxerlady

my mistake… I’ve realised now this related to my hydroxychloroquine which I also take! Thank you

Bookworm55 profile image
Bookworm55 in reply to girli1111

Definitely carry on with eye checks while on hydroxychloroquine as I was taken off it when abnormalities were detected on my retina four years ago. Check ups since have confirmed these repaired once I stopped that drug.

helixhelix profile image
helixhelix

The only drug I know that must be accompanied by eye monitoring is hydroxychloroquine.

But I would nevee say no to extra checks!

girli1111 profile image
girli1111 in reply to helixhelix

ahh, now that makes sense! I’m also on hydroxychloroquine (I forget to mention it as I’ve been on it for about 20 years now I think! Thank you

medway-lady profile image
medway-lady

I don't think so but you should check with your RA team. I took it for years but am shortsighted so see an optician anyway.

bettif profile image
bettif

I’ve been in leflunomide for some years now and I’ve never been advised to have eye tests. Please post if you hear differently from your rheumatoid help line.

girli1111 profile image
girli1111 in reply to bettif

I’ve now worked out that the eye check is to do with me also taking hydroxychloroquine

smilelines profile image
smilelines

I have never heard of leflunimide being hard on eyes.

Mmrr profile image
Mmrr

I've been taking leflunomide for several years and have never had any extra eye checks.

madme1 profile image
madme1

Never heard of this girli1111, whilst I'm not on Leflunomide I am on Metho, just wondering if its something I should discuss with my rhuemy team.

girli1111 profile image
girli1111 in reply to madme1

I’ve made a mistake, eye tests are to do with hydroxychloroquine that I also take, sorry for causing worry

madme1 profile image
madme1 in reply to girli1111

That's ok no worries, we are dealing with such a lot.

junik53 profile image
junik53

I have to have this extra eye screening due to diabetes,I am on MTX and have also been on Lef and was never told to get the eye screening for this. But having said that if I were you I would have it anyway as they do a scan of your eyes for free,opticians charge £10 for this service and not all of them have the equipment.

Travelodge profile image
Travelodge

I am on leflunomide and hydroxchloroquine. I have my eyes tested every year due to being on the hydroxy.

Green230461 profile image
Green230461

I had eye monitoring on leflunomide 🌺 was also on humira and sulphasalazine 🌻

CyclistWithRA profile image
CyclistWithRA

i am also on leflumomide daily and mtx weekly. But my dr never asked me to do any regular eye check ups nor i felt any eye issues. I do annual eye check ups anyways as part of the routine though.

Carolsos profile image
Carolsos

When I was at the hospital for hdy I was advised to cut my dosage of hdy to only one tablet instead of two as have been on it for 7 years now. The hospital don't like me bring on hdy too long. I am still waiting for my consultant to send me the letter about the change.

girli1111 profile image
girli1111 in reply to Carolsos

interesting….. I’ve been on it since I was first diagnosed, it’s never mentioned at appointments! I will ask about long term use next time I’m there

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