IBS and LEF

[Dece]

I have been on LEF for about 3 months now to supplement the MXT. It seems to be helping my RA but is giving me chronic IBS. I keep waiting for it to ease off but it's not, if anything it's getting worse. Has anyone had a similar experience with LEF?

[KittyJ]

if you put that into the search box all past posts about it will come up.

[Amnesiac3637]

It’s certainly known to cause diarrhoea as a major side effect. I couldn’t tolerate it due to that and if you’re not improving on it and have another set of symptoms to contend with I’d go back to my rheumatologist and find out an alternative.

[skinnycappuccino]

Hi Dece, I'm sorry to hear you're not tolerating Leflunomide so well. While I haven't had any side effects from it (was on it for about 9 years, was able to stop it recently because Rinvoq qorks so well on its own), a friend of mine did and her rheumy suggested she take it at night so she'd sleep through any side effect. That worked for her! Maybe you could try that? All the best, Christine

[Haz58]

I don't have IBS but lef gave me chronic diarrhea too. It was awful! My rheumy too me off it and it took 2 to 3 weeks to stop. I'm now on biologics which are great. Contact your rheumatologist or nurse. X

[Dece in reply to Haz58]

Hi Haz58 Thank so much for your reply. I'm just so fed up with the pain and diarrhoea that I've got to get something else. Trouble is my Rheumy seems to want to keep me on Demards, probably because they're cheaper. X

[Haz58 in reply to Dece]

I was told I had to try 2 DMARDS before anything else. Bit I ended up trying all of them. Like you say they are cheaper. Only sulfasalazine was ok for me but not enough so I got Benepali jabs too. I hope they get you sorted which I'm sure they will. X

[Dece in reply to Haz58]

Yes it's the same for me, I've tried them all now. The rheumy just won't hear of taking me off MXT even though it makes me feel really ill and nauseous for about 3 days after injection so I hope I have better luck with LEF. I'm pleased that you're sorted now with Benepali jabs. Xx

[spartacus101]

I have been on leflunomide for about 10 months. It gave me diarrhoea and wind for the first 7 months and even now I always plan my day so that I know where the nearest toilet is. Before this I was on methotrexate, which made me vomit, and I tolerated this for far too long before letting the rheumatology team know, who then took me off it really quickly.

[Dece in reply to spartacus101]

Thank you so much for your reply Spartacus101, I can't take this level of IBS anymore. Am seeing Rheumy tomorrow, wish me luck.

[spartacus101 in reply to Dece]

I worried,unnecessarily as it turned out, that I would't be switched to something else. When the side effects outweigh the benefits it is not unreasonable to look for alternatives. 🤞for a productive meeting tomorrow.

[Haz58 in reply to Dece]

How did you get on Dece?

[Dece in reply to Haz58]

Hi Haz58Thank you for asking Haz58. I had a really good meeting with my Rheumy, he really listened to me and told me to stop LEF immediately. I am to be given a biologic instead to go alongside the MXT so I'm waiting to speak with a biologic nurse and then I'm good to go.

It was good to be listened to.

Thanks again

Take care

Dece xx

[Haz58 in reply to Dece]

Excellent I'm so glad they listened to you. Onwards and upwards now hopefully 😊 xx

[Dece in reply to Haz58]

Yes thanks Haz58, I really hope so xx