Leflunomide

[Djohnston1971]

About to start Leflunomide for RA, not really looking forward to it, I must admit. Can anyone help with their experience of side effects please 😫 also benefits x

[bpeal1]

I’ve been taking leflunomide for 11 years. I’ve not had any side effects. I had the best response out of all the DMARDs from leflunomide but unfortunately still not enough for me so biologics we’re added.

[Deeb1764]

I would say just go with the flow as all of us experience so many ranges of good and bad with the medications. The autoimmune illnesses seem to vary so much from one person to another it’s mad!

Personally I went thro 4 drugs and some made me very ill but I kept getting back on the horse until I was put on Baritcitnib which suited me.

What I learnt was keep a diary of how I am feeling and call to speak to your RA team if at any point you don’t feel good to talk it out 😘

[vonniesims]

It can raise your blood pressure. Otherwise good

[Pamakh]

I have been on leflunomide for 7 years now. No side effects. But I have high blood pressure.

[MidnightBlue2001]

I've been on Leflunomide 20mg for about 6 months. It worked okay for a few months but became less effective over time. My consultant is looking to add Methotrexate to see if it will help. I felt very spaced out when I first took it but things gradually improved. I wish you all the best and I hope it works really well for you.

[marie66]

Everyone is so different. I hope it works well for you. I was on leflunomide for four months. I felt the best I’d been in years, I was losing weight though, 2lbs per week but I could live with that. The issue was I developed dark skin discolouration (a bit like a pregnancy mask) on my face and it spread to my neck so I was advised I had to come off it. Shame really as I felt really well on it. M x

[aliplayspiano]

I was on it for about a year. I lost a lot of weight on it and it didn’t really control my RA well enough so I switched to biologic.

[Chelleobie]

I been on it for 3 no side effects

[skinnycappuccino]

Heya Djohnston1971, I've been on leflunomide (20mg) since 2012/13 (can't remember!) and haven't experienced any side effects all these years apart from slight thinning of the hair (can't say the same about MTX, which I was on before leflunomide and which didn't agree with me at all!!). My rheumy suggested taking it in the evening to prevent side effects and so far this seems to work well. Can't really say much about any primary effects because I've always taken it alongside a biologic and also hydroxy. I might be able to stop it if Rinvoq continues to work well, fingers crossed. I wish you much success with leflunomide! All the best, Christine

[Haz58]

Everyone is different. When they upped my dose to 2 a day I got diarreah on the 3rd day and was told to stop the Leflunomide. I had diarreah for a month after stopping it. BUT I do have a VERY sensitive stomach. MTX gave me Gastritis. Now I'm slowly building up on sulfasalazine. I hope Leflunomide suits you.x

[Juliesb]

I've been on leflunomide for 8 years with no side effects at all. Prior to that I had methotrexate, sulfasalasine and hydroxychloroquine which all had side effects so was a huge relief when there were none. It worked for 5 years alone and now have rituxan with it. Good luck.

[Ferret18]

It’s been a game changer for me. No side effects and my RA is stable. I’m also on hydroxychloroquine and Sulfazalazine. Hope it works for you.

[smilelines]

I take 10 mg In the morning and 10mg at night. The 20mg at once made me run to the bathroom. Other than that no side effects. Much better for me than the methotrexate. Have you tried methotrexate? It seems like they put people on that before the leflunimide.

[Toffee1878]

Hi, I think the main message here is that everyone's story is different, good or bad! I started leflunamide alongside methotrexate last October and from the start suffered nausea, intermittent diarrhoea and terrible fatigue! I was diagnosed with RA in Nov '21 and have had flare up after flare up, needing a course of steroids every 10-12 weeks! I stopped the leflunamide in February and started biologic therapy in March (alongside yet another course of prednisolone as I'd virtually turned to stone!) However on top of this I've been in hospital for a week over Easter with a really nasty chest infection which has sent my asthma absolutely haywire. I've been put-on an even higher dose of steroids for that so at the moment my joints are fantastic. It will be interesting to see if they remain so once the steroids are tapered off - another 6-7 weeks. The plan is to gradually reduce the methotrexate but as others have said, remaining on 25mg a week for now to mitigate antibody production vs the biologic therapy.

Good luck with your treatment - hope your journey is a good one.

[Mmrr]

I've had no problems with Leflunomide at all, but I don't tolerate other DMARDs well.

[lala1958]

Hi ,

I have been on leflunomide for approx 1 year. It helped but not entirely so I stopped approx 5 months ago. I liked the fact that I did not gain weight but actually lost a few pounds. I did lose my hair more so thinning was an issue for me and I had some gastrointestinal issues. I stopped due to my hair loss and gastrointestinal issues. I took a 6 month break from dmard and biologics and it was terrible. I could not get off the couch and was in a perpetual flare. I’m on Humira now and feel much less pain and more energy, however I have gained weight so I’m happy that the drug is working but not the weight as I’m having knee surgery soon. I have been on quite a few drugs in the last 11 years so it’s trial and error. Keep good records with the drug so you can let your RA team know

I hope the drug works for you. All of these drugs have risk and benefits and everyone reacts differently, and you may be really happy with it. Good Luck with it.