Has anyone done a Leflunomide wash-out?

[gem2]

I've been on leflunomide for a few years and now want to start trying for a baby. So I've been adivsed I need to do a wash-out with charcoal or cholestyramine. Has anyone else done this? What is it like?

I've heard it makes you quite ill (with vomiting and diarrohea) as it clears everything out. I'm quite slim so my rheumatologist has recommended only doing it for 4 days rather than the usual 10 because of weight loss.

I also wondered if people have experience of continuing drugs during pregnancy? I'll definitely be stopping the leflunomide but I'm also on hydroxychloroquine and ciclosporin, which the rheumatologist says is OK. But I'm thinking I'd rather be safe and not take any risks with the baby's help. Any advice/sharing of experience would be welcome. Thank you.

[sagil]

I was on leflunomide for 6 weeks and lost too much weight so I did have take a powder twice a day to rid my body of this drug. I next tried Enbrel had reactions so now am just starting Actemra, hope you do well.

[gem2 in reply to sagil]

Thanks for your reply, Sagil. I have found it hard keeping weight on with leflunomide too. I hope Actemra works well for you with fewer side effects. All the best.

[Claire32]

Hi, Ive had the Lefluminide washed out with the cholestyramine. It comes as powder which you add to a drink. I was fine, I found it hard to drink as it felt like the powder wouldn't dissolve into the liquid and it didn't taste that nice (I might have been doing it wrong!) but I didn't have any vomiting or diarrohea. I don't have any experience of continuing with the drugs through pregnancy as my RA came on shortly after my first baby. Good Luck xxx

[gem2]

Hi Claire32 Thank s for your reply - that's good to know. I checked with the rhuematology nurse and she does say lots of people have diarrohea so you were one of the lucky ones! I'm hoping I will be too All the best xxx

[JennySLT]

Hi Gem, wishing you luck with the leflunomide washout and hope everything goes well with your pregnancy. As someone who has developed RA before having children, this issue has always been at the forefront of my mind. I'm not sure whether I would continue to take meds during pregnancy either but I have heard that the pregnant body is very good at telling the immune system to stop being awkward and just let you get on with growing your baby! Anyway I hope it all goes well for you!

Jenny

[carbeck]

High I have done a washout after having come off Leflunomide, I did not have any vomiting or diarrohea, the worst thing was not being able to take my other medication, especially the pain killers. I was not trying for a baby (already had several) I hope it goes well with you

[Amzy411]

My partner is trying to get Cholestyramine for lefnomide washout but gp said no he will have to wait it out of his system do you think rheumatologists will prescribe it? (Trying for baby no3)