Leflunomide Side Effects

[HailesO]

Hi,

This is my first post and here and would be great to hear back from the community. Dealing with RA can feel so isolating.

I've been suffering with RA for some 10 plus years and a couple of years ago was prescribed 10mg of Leflunomide to support the Sulfasalazine. At a recent check up my x-rays showed further erosion in my hands and the dose was increased to 20mg.

Not long after I started with numbness in my hands, increased headaches and my eczema ramped up along with palpitations.

I contacted the hospital helpline and was advised to stop taking the Leflunomide. I'm now into my 5th week of not taking the leflunomide and all side effects have calmed down and even the eczema looks to be clearing up!

I was wondering if anyone else has had a similar experience to me?

I've seen the consultant today who has increased my dose of sulfasalazine and I go back in 3 months to look at introducing either Hydroxychloroquine or Adalimumab. Appreciate we are all different and react differently to medication but would be great to hear if anyone else has been in a similar position.

Thank you 🙂

[sylvi]

Well you have found the right place to come to darling, welcome to a group nobody thought we would join. I haven't experienced any of your symptoms, but i an sure someone on here will have. I do alright in the sulpha, hydroxy regime. I can't take biologicals as every time i do i get chest infections. Hugs from me. xxxxx

[cyberbarn]

Interesting that your eczema flared up with the increased dose and then calmed down again. I have psoriatic arthritis with very little psoriasis. My Rheumy refused to let me try Leflunomide because she said it can cause psoriasis to flare. So are you sure that the eczema is not psoriasis?

[HailesO in reply to cyberbarn]

Thank you so much for your response. My diagnosis is ACPA positive so I guess they never thought taking leflunomide would cause these issues.

I've taken a look at images of psoriasis along with the description and it ticks all the boxes.

It was initially aggressive on my face, particularly mouth/chin/eyes. This then became infected. The itch was like nothing I've ever experienced. Lotions/steroids have helped manage this on my face but it then progressed to my right hand and wrist area. Whatever I did I just couldn't nourish my skin. I shall be asking further questions as to whether it is in fact eczema or psoriasis?

Just shows it's good to share experiences 🙂

[smilelines in reply to cyberbarn]

Very interesting. I have psoriatic arthritis and take leflunimide.

[smilelines]

I needed to cut back on the leflunimide as my liver enzymes spiked. Once I did I noticed that the nerve pain in my feet reduced immensely. It seems that they really don’t know a lot about the side effects we can get.

[jackNruby2]

Hi, R A is an awful collection of symptons and I agree it is isolating because only another victin can understand what we go through. I have never been on Leflunomide but my experience of sulphasalazine and Hydroxychlorine was a positive one, ecept that I couldn't eat grapefruit, which I love. I am on a two year holiday at the momemt and I don't feel much difference. It is such a worry that Rhumatologists differ so much on various treatments though. Take care

[Rhianydd]

hi,

I also had a reaction to leflunomide. It was exactly as you described a terrible rash initially on my back but spread to my entire body. The itch was excruciating. I had initially been put on methotrexate but my liver couldn’t tolerate it. Unlike you I also had a reaction to sulfasalazine and ended up with a form of meningitis that was caused by it. I am now taking filgotinib as the biologics also didn’t work to well either. So my point is it may take a few attempts but you will get something that works for you.

[HailesO]

Thank you for your response I’ve found it comforting in a strange way to know I’m not on my own. I too can’t tolerate methotrexate. Your reaction to sulfasalaine sounds horrendous. Fingers crossed filgotinib works for you. The care