Nasty side effect?

[Harry_20]

I’m settling onto Leflunomide and it is certainly helping my rheumy. But I keep getting bouts of queasiness, churning guts, vomiting and diarrhoea (sorry, bit graphic). Has anyone else experienced this with Leflunomide? Can anti-nausea pills help? Is it worth contacting my GP or rheumy nurse?

[rokia]

Hello Harry sorry to hear about these side affects from leflunomide. My daughter had bad side affects the same as you are having after two weeks she stopped eating as diarrhoea was too much so she was not given it again . We were told it can settle down in some people. But I think you are gng through a rough time with it . I would discuss it with your rheumy doctor get it changed

[RAexperiences]

I had out of control diarrhea on it to the point I wondered if I had chrones. It took several months and really worked for the RA but I had to drop it as I was afraid to leave the bathroom! It can take years for that drug to leave your body. Wish I had never tried it. I find that scary, you can take yet another drug to get Leuflonimide out of your body. Best wishes to you Harry.

[Hidden]

Some do well and others not like all RA drugs but I did not suit this one either!

[RosieA]

You should certainly contact someone for advice. I took it and within 48 hours I had developed a terrible sore throat and mouth sores but tried to persevere. I finally stopped it after a couple of weeks. I rechallenged myself a little later and the same thing occurred. I wish I had stopped sooner as the side effects took some time to resolve.

I think it is a balance between giving something a good go and actually a drug just not suiting you. Don't be too stoic and call for advice. Good luck.

[Bopeep12]

Although I did well with let I had the same side effects and had to stop. Seems to be quite common

[Harry_20 in reply to Bopeep12]

Thank you

[Ferret18]

Sorry to hear you’re struggling. I would definitely speak with your rheumy

I’m on Leflunomide but never had those issues, just problems with low WBC and neutrophils

Good luck

[Harry_20 in reply to Ferret18]

Good to know. Thanks

[Carolsos in reply to Ferret18]

I have not had those problems but have WBC and neutrophils too

[medway-lady]

I found it to be the wonder drug unfortunately because of kidney failure it was stopped but it was not the LEF that did the damage. It only stays in the body a short time as a dose it just has an afterlife in minute, minute amounts. I was told in that its detectable but not in a theraputic dose; it stays for years is a myth according to the Nephrologists who treated me and the RA team. I also had an upset tum for a couple of weeks along with worse pain then like a miracle all the side effects just went. So if I were you I'd contact your RA team to discuss if its worth trying for a short while longer or calling it a day.

[Harry_20 in reply to medway-lady]

Many thanks. That really helpful and hopeful!

[Mmrr in reply to medway-lady]

Interesting.

I've was told by rheumatology and my GP that leflunomide can stay in the body for up to two years with the longest half life of all DMARDs. Hospitals often use charcoal tabs / IVs to help 'wash' out leflunomide before beginning new treatments or if side effects are very troublesome.

Literature on the web would support this view.

[medway-lady in reply to Mmrr]

I know I believed that as well but when I was admitted into A&E with the AKI all meds were stopped as they do, and I saw a Japanese Consultant RA doctor along with the Consultant Nephrologist. I thought oh hell I'm gonna get a washout as if things are not bad enough already. The Nephrologist said no its not an allergy and a couple of days after taking yes its still there but not in sufficient amount to affect anyone who is not allergic to it. So I don't know for sure but it seemed to me that there might be two reasons for action, one being allergy so its wash out the other just being a stop for any reason and it then can be allowed to wear off. And of course I had no RA meds then for six months anyway so it was not going to affect anything else.