Leflunomide - has anyone had success on this?

[mistygrey]

Hi

I’ve just started Leflunomide I really hope it works for me as I’ve failed methotrexate and Sulfasalazine due to bad side effects.

Has Leflunomide been successful for anyone else? 🙂

[mistygrey]

Hi Dottie I am also on Hydroxy been on it for awhile but they’ve added Leflunomide now, started last night. Hopefully it’s good for me too as it is for you 🙂

[mistygrey]

I hope so!! So far I’m just very tired this afternoon but that’s nothing new for me. Did you get any side effects at all on it?

[nomoreheels]

Leflunomide was my 4th DMARD. Like hydroxychloroquine & sulfasalazine I had to come off it. Now I just take methotrexate & low dose prednisolone, plus NSAID etc. LEF works well for many though, hope you're one of them. I’m common with other DMARDs it can take some time to work though, but you probably know that.

[mistygrey in reply to nomoreheels]

Hi Can I ask why you had to come off it? I hope it works for me, I’ve tried methotrexate and Sulfasalazine but didn’t get on well with them sadly. Which is a shame as methotrexate really helped my feet pain and quite quickly too.

[nomoreheels in reply to mistygrey]

I had neurological problems unfortunately, which resolved when I stopped it. Had tests whilst on it & re-tested when I halted it, & since then had no further problems. It's known but as with any other side effect it's not a given you have them. You just give them a chance & if all's well then that's great. ☺️

[mistygrey]

Was that the sulfasalazine that caused the headaches and fatigue? It made me have heart palpitations weirdly enough. But methotrexate made me feel like I couldn’t move from the seat 😧

[Bessie7]

Hi, I’ve been taking Leflunomide for about 6 months and it’s been great. I swapped to this from methotrexate. I was struggling to walk due to pain in my feet and it’s really helped. At first I felt like I had brain fog and a little nausea but it settled. I’ve also had ongoing mild GIT side effects. But it’s definitely worth it because my feet are so much better. I also have Remicade infusions every 6 weeks. I really hope it works for you 😊

[Ferret18]

Hi, it’s been great for me. I take with hydroxychloroquine and sulfazalazine. I swapped from metoject due to the awful nausea. The only side effect of Leflunomide on me is it lowers my WBC and neutrophils.

[Need2knowN]

I’ve been on it for about 3ish years. No significant side effects - I have a bit of hair loss but nothing awful. No damage in my joints so must be working. 👍🏿

[smilelines]

Leflunimide has helped me. I don’t think I have any side effects at all. With methotrexate I had stomach cramps. I lasted only 3 injections! Sulfasaluzine did nothing but give me sores on my face.

[Smudge-1]

I have LVV and I’ve been on it for 12 mths, mainly 10mg. However when my prednisolone dose became low I have had to increase to 20mg in the last couple of months. However I’m really pleased that it has enabled me to come off steroids (though of course I am now more immune suppressed!). The only side effects I have is v mild diarrhoea (entirely manageable) and liver blood test slightly outside the range. They don’t seem concerned about that. Will be on it a while before I try tapering it. Unfortunately they say can only be on 10mg or 20mg so I will have to taper by changing doses on different days of the week. No doubt I’ll have a tapering programme in due course!

[Garnacha in reply to Smudge-1]

I was on 20mg but getting awful pins & needles, the consultant said to go back to 10, when I asked isn't there a 15 he said, oh yes you can get them now, been on 15mg since December 2021 although still have pins & needles 🙄

[Smudge-1 in reply to Garnacha]

That’s interesting thanks. Who supplies them? What is their trade name? Are you n the UK? I need to look into it.

[Garnacha in reply to Smudge-1]

Sorry we're just in the airport waiting to board to fly home to the UK, I don't have the box with me as I took the last one today but will check when I get home & let you know, probably over the weekend x

[Garnacha in reply to Smudge-1]

The box says leflunomide medic film coated tablets 15mg. Medac GmbH. Theaterstr. 6. 22880 Wedel Germany

15mg leflunimode

[Smudge-1 in reply to Garnacha]

Many thanks. That’s very helpful. And was that a UK nhs rheumy who prescribed them?

[Garnacha in reply to Smudge-1]

Yes, I'm in South Wales x

[mistygrey]

Did the Leflunomide give you any initial tiredness? I’ve got that now but I was already extra tired before starting it anyway so hoping it passes x

[Mmrr]

I take leflunomide alongside toficinitib, they are the only medications that I have nig experienced side effects with.

[RApatient]

I tried Leflunomide but broke out in a rash. They decided I was allergic to sulfa products. After trying several oral medications with lots of stomach issues, it was decided that I would not be able to take oral RA medications. I am now in a biologic which seems to help. Good luck with RA medication trip; hope you find something that works!

[Anniebl24]

Most successful one for me. Makes my skin a bit dry. Good luck with it.

[medway-lady]

Brilliant a few side effects then remission for many years. Forgot I had RA then due to the kidney injury( not due to LEF) had stop it.

[MsGreenwood]

Hi,I've been on leflunomide for a year now with very little in the way of side effects apart from it has caused a reduction in neutrophils so have to be careful not to catch infections (not great with so much covid about!). The only other issue I had was hair loss after the first few months when I went up to 20mg but that is ok now, probably partly due to taking biotin which helps with any hair loss. I was previously on sulphasalzine, hydroxychloriquine and a couple attempts with methotrexate. They all cause unacceptable side effects so I've found leflunomide the best DMARD I have been on.

Good luck - I really hope it works for you.