leflumomide and 'washout'

rosiepurves

Hi everyone hope your all well. I had call from rhuemy nurse today and bloods are not good I must stop leflunomide straight away and pick up percription for wash out drug tom. my liver just can't take anymore. I was wondering if anyone else had washout treatment before and what was it like? The nurse said it might make me un well but didn't say how long i've to take for or how many tabs a day or anything. i just have to collect drugs tom.
Thanks in advance
Rosie x

jenzie06

Hiya
I was on leflunomide for a couple of years but stopped it as it was no longer effective after I'd had glandular fever and whooping cough. Also I get married in march and my partner and I would like to start a family in the summer. With leflunomide you have to be a year clear before even attempting to start a family. My rheumy then decided to be on the safe side I should have the wash out - he started to tell me it was done with a big tube but then laughed at my shocked face! He said it would be 3 tablets a day for 11 days. Unfortunately, the pharmacy only had powder so I've got to drink it - I just know its going to taste lovely!!
I haven't started it yet so let me know how you get on!!

Jen

lindalegs

Hi Rosie,

This washout doesn't sound nice - hope you go on alright. Please let us know what happens.

Luv Legs

sweetpea

I did the washout treatment for leflunomide a year and a half ago as we are hoping to conceive and my rheum told me the drug stays in your system for 2 years. I had 3 powder drinks of Cholestyramine a day for 11 days. I think thats the standard treatment. It is slightly unpleasant but wasn't as bad as I thought it would be but like everything it depends on the individual.
The main problem I found was that it made me feel sick and can/does upset your tummy. I was sick for a couple of days but was able to presevere through the rest of the treatment without too many problems after. I found that having a fruit pastille or something sweet after helped to take away the taste-the drink is a bit like trying to drink a watered down version of wallpaper paste! If I remember correctly, I think the normal powder version was slightly better and less gloopy than the sugar free one. I also made a chart so that I could tick each time I had the drink to help me get through the 11 days and do a countdown!
Good luck to you all

purvesrosie

OMG i started this on friday and had to stop sat night i was violently sick, couldn't even keep water down. i hope my rhuemy nurse doesn't give me wrong, my hubby was close to calling an ambulance saturday night after i was sick i stumbled into the bedroom and collapsed! it's now sunday night and i'm only just out of bed and having some food, lets hope it stays down! I hope theres another option even if its just to delay DMARDS for longer, i canot go through ten days of that!

purvesrosie

My nurse phoned back and said to get my bloods done asap and if ALT (i think. you know the liver one) has improved i won't have to take washout So fingers crossed. if anyone has a spare minute tonight you could say a little pray for me lol. I know i will be I've spent all afternoon drinking water and cranberry juice in an attempt to flush liver. I've no idea if it will help but makes me feel better to try. Anyway hope your all ok thanks for listening xxx

sweetpea

Purvesrosie-just read your last 2 posts and want you to know I am thinking about you and can sympathise. It isn't a pleasant experience at all and I hope that either you begin to feel better on the washout or your alt is ok so that you can stop. My worse days were the 3rd and 4th day and it did improve quite alot after that-some days I slept with the 'sick bucket' beside me but luckily I wasn't sick for the rest of the treatment and could keep food down. Keep in touch with the rheumy nurse and let them know how you are. My rheumy said to me that alot of people can't tolerate it. Hope the cranberry juice is helping and being kept down. Take care and let us know how you are doing x