Leflunomide

[Brymc]

Hi, I was diagnosed with RA in 2009 and stared off on hydroxychloroquine and that seemed to help a lot for a number of years.When I started to get worse they added sulphasalazine and all seemed fine for a couple of more years.Methotrexate was added in 2016 and I had a really bad reaction to that so it was stopped immediately.Last year they had to stop the hydroxychloroquine when I started to get problems with my eyes( which is still unresolved).They have recently started me on leflunomide and I am getting really dry skin and also dry eyes, I’m not sure if it is the leflunomide that’s causing that or something else, the dry eyes concerns me the most, has anybody else had the same problems?

[KittyJ]

Dry skin or a rash is listed as a possible side effect of Leflunomide but not dry eyes, have you spoken to your rheumy or optician about your eyes as it could be something else, best to get it checked out.

[Brymc in reply to KittyJ]

Thankyou, my consultant has referred me for more tests.

[medway-lady]

I had a dry mouth but not eyes and it was a great medication for me for many years. A few side effects for a week or so then nothing but good effects.

[Mmrr]

My skin is a little dryer with leflunomide, but easily resolved with moisturising cream. I've always had dry eyes since being diagnosed and use prescribed eye drops.

Otherwise I have no side effects from leflunomide.

[oldtimer2]

My dry eyes crept up on me some years ago - I felt more as a part of aging. The optician pointed out that I was more likely to get the problem with Rheumatoid Arthritis anyway (and has been more helpful than the medical team). I've no experience with that medication - I haven't had leflunomide as my blood pressure is unstable enough already.

[SL53]

Hi. Sorry to hear you’ve had so many horrible problems. It’s bad enough with the rheumatoid arthritis!! I was diagnosed with rheumatoid arthritis two years ago and immediately started on Hydroxychloroquine. All seemed ok with me taking this medication but…………in the last few weeks I have had the most terrible dry eyes which presents with eyes watering like nothing on earth. There appear to be over compensating for the dryness. With this I have photo phobia and have to wear sunglasses to help this. Is too uncomfortable to look at a screen, ie television or computer. I didn’t actually put two and two together and think it could be the Hydroxychloroquine causing this as I’ve been taking it for two years with no problems! But this has got me thinking 🤔 I will contact my rheumatologist. I have visited an optician and she diagnosed Sjögren’s syndrome but we didn’t think it was the medication causing it. Wishing you good luck In getting sorted, it’s horrible

[Brymc]

Hi, thanks for getting back to me.My eyes problems started the same as you, watering continuously on a morning. It’s important to have regular eye checks when on hydroxychloroquine, my optician picked up on a problem with mine last year,I believe it was distortion on the amsler chart. Unfortunately our local hospitals don’t seem to have the equipment to diagnose ocular toxicity and refused to see me, not good.My consultant has now referred me to spa medica to see if they can get to the bottom of my problem.Wishing you good luck too.

[Moses5]

I was on leflunomide, I took myself off because yes had very dry skin & dry eyes as well, because I had told my consultant about my dry skin & dry eyes, he wouldn’t listen to me, and because of lockdown I hadn’t seen my consultant for 2 years and I was really getting frustrated with how bad my skin was getting, & how my eyes were, I decided to stop all pills to see if my problem skin would improve, and yes it did & it’s almost back to normal, I finally went to see my consultant face to face this time, I showed him how my skin has improved by not taking them, guess what he has told me to go back on the leflunomide for eight weeks to see if it happens again, he has given till 19 of this month to see if it has appeared again, but the first time it took a couple of years for my skin to start drying, so I don’t know what he plans to do for me on the 19.

[Brymc in reply to Moses5]

Hi, my consultant has done the same as yours, I stopped for 3 weeks when I got really concerned about what was happening to my eyes.I ended up going to eye casualty, they said the surface of my eyeball was like crepe paper, so dry, they gave me eye gel to put some moisture back in them. I told my consultant I was stopping leflunomide because of this he checked me for diabetes and Sjögren’s syndrome, they both came back negative so he asked me to restart leflunomide for a couple of months to see if the symptoms persisted.He wants me to go on biologicals but says they work best when combined with leflunomide or methotrexate and I’ve already tried methotrexate and had a really bad reaction to that.

[smilelines in reply to Brymc]

This is the first time I have heard biologics work best with methotrexate or leflunimide. That is really disappointing to hear. That is terrible how dry your eyes were. What else could it be? How were your eyes when you went off of the leflunimide? Are you back on the leflunimide now? I know leflunimide stays in the system for a long time so I am wondering how long you were off before you saw improvement in how your eyes felt. I ask because I am wondering if my eyes are bothered by it,too. I thought it was my glaucoma medicine but it had not bothered my eyes for years. Then I started the leflunimide. Now my eyes are dry. I have even started to wear swim goggles to keep them moister.

[smilelines]

I have dry skin from the leflunimide and I need to put lots of lotion/oil on. I have dry eyes and use drops but I thought that was to do with the drops I am on for glaucoma. I feel the same as you. Dry eyes are very unpleasant while dry skin is bearable.