Horrendous upset tummy on Leflunamide

[Sallyb828]

Hi all, I was diagnosed a few years back and since then I've tried a few meds, with not much effect. I was tried on methotrexate injections but had an allergic reaction (terrible hives, rash and swelling of throat!) Hence I was then swapped to leflunamide- whilst I feel it's working the best for my RA, I just can't cope with the severe diarrhoea as a side effect it's impacting my life and I can't imagine continuing like this as life returns to a more "normal" condition as I wouldn't want to go out anywhere. Has anyone has any similar effects and found anything useful or do you know if I could be started on biologics even if my bloods and recent scan are positive?! Its been 8 weeks now and the upset tummy just isn't improving xx

[Barrister]

You really need to contact your rheumatologist because Leflunamide is known to cause diarrhoea and you shouldn’t have to continue putting up with it. I wasn’t given Leflunamide specifically because it can cause this side effect as I already have colitis. There will be something else that you can try.

Clemmie

[Marionfromhappydays]

Not nice for you at all, I would speak to your team about changing, it's not like you haven't given it a good go.

I know when I started biologics a few weeks ago they took my DAS score and it had to be above 5 I think, but might be different in different areas.

Hope you find one your body gets on with x

[Neonkittie17]

Hi Sally, I took Leflunomide for one week as each one made be very ill with stomach upsets so my rheumy said stop immediately. This was many years ago and she didn’t try keep me on it as she was wanting me to go on a biologic and I was reluctant but after this I said yes. I’m not sure if there is anything they can give you to alleviate and make tolerable these upsets so you can continue. You’ve tried two DMARDs one of which was MTX and both haven’t suited so maybe your rheumy will get you a biologic now. Two months is long time to feel so upset with your tum. Sorry to hear this and hope you can ask them to review this ASAP. Good luck. x

[Madmusiclover]

Agree. Don’t suffer in silence. Alert your rheumy. Dare I say it? Other better drugs are available. I had to try 6 before I found one that suited me!

[Anniebl24]

I am on leflunomide. I was on 20 mg per day and it upset me. The rheumy told me to split it ie 10mg am and 10mg evening and it has made quite a significant difference.

[Pixieouchy in reply to Anniebl24]

Hi Anniebl24

Do you have any side effects taking the split dose that way

[Bopeep12]

Did the same to me. Great for RD but couldn't cope with diarrhea. Tried for months but didn't improve

[Sallyb828]

Thanks all for your input, I am waiting for a call back from the rheumy team but think I will be having to stop, I literally can't live like this I just don't know if they'll go to biologics if my score isn't high enough but guess will wait and see, just want something where I can have a better control of the pain but not feel so horrible all the time with side effects Thanks all xx

[Wobblyone]

I had the same, but I stuck with it and eventually the diarrhoea subsided and so did the RA. It's definitely been the best drug for me.

[Sallyb828 in reply to Wobblyone]

How long did it take for the upset tummy to subside if you don't mind me asking? I've been on it about 8 weeks now but if anything its for worse and worse? X

[Wobblyone in reply to Sallyb828]

I was on them for about 3 months, during which time I always had the runs. I had to stop them for about 4 weeks as I was going into hospital and once I restarted them there were no more bowel problems.