leflunamide side effect question (tmi sorry)

suzster

sorry to ask this, slightly unsavoury question!
i know leflunamide can cause tummy upsets etc, but it would seem that every time i eat anything i need to rather urgently, erm, do a number 2 after! sorry, i'm trying to be polite!
but literally about 10 minutes, sometimes a bit longer,(like when there's no loo for miles!) after eating i get the grumbling tummy then i got to go.
is this normal? and if so will it settle?
any help or advice is very much appreciated.
sue :oops:

valval

sue can not help but do feel for you what a night mare hope some one comes on to give you advice if not message the care line they very good

lizzie7ne

Hi Sue,

It may settle. I know what your are going through cos I went through the same. I was started on 10mg Leflunomide in July 2010, was reasonably Ok and told to step it up to 20mg at the end of July and it gave me the runs, this carried on until my Rheum appt mid Sept, by which time I had a prescription for imodium from the GP and I was carrying a packet of imodium instants around with me when I went out, not nice. The Rheum reduced it to 10mg in September and things improved gradually by that I mean I just had the runs two or three times a week instead of every day, then in December it stopped and everything went back to normal It was increased to 20mg again in Mid January and so far so good , not had any problems, and I am hoping it will remain like that.

It may be worth having a word with the GP just to rule out anything else, and perhaps giving the Rheum nurse a ring, maybe you just need the dose adjusting a bit.


lizzie

Wonkylegs

so sorry you have got this to deal with.

From my personal experience I can only say that for me when I first started the 10mg it lasted about 2-3 weeks and then gradually settled down.

When I upped the dose to 20mg it came back, but again after about 2 weeks it was improving, but they had to cut me back down to 10mg cos of infections.

I do hope that it does calm down for you. My rhuemy nurse said that this was one reason that some people couldn't stay on the LEf, as they couldn't cope with how it affected them, but hopefully it will just be for a while ...... hang in there!

hugs
Wonky

suzster

it's only got this bad in the last 48 hrs, annoyingly i spoke to rheumy last thursday about my earache, when things weren't as bad, i told her that i'd had no major problems!! always the way!
i'll see how things go and talk to my gp if they don't improve, the imodium might be worth trying though, my rhuemy nurse did say that i could take it if needed.
thanks everyone, sometimes just knowing others have had the same problems really helps!
sue

suncatcher

My tummy is a lot better since dose has been lowered for a bit. I had to seek the loo urgently before and take cocodamol which eased my runs. joanne

wallysatt

I have the same problem Sue.

I’ve been on leflunamide for about 5 years and my tummy is terrible. My rumo said that it can course IBS.

I’m on fibogel for when the symptoms are really bad as it‘s supposed to balance you out.

I’m particularly bad if I’ve eaten spicy food. On a recent trip to Nandos with my friends I had to go twice before we even left the restaurant!

I hope it gets better for you.

Sally.

suzster

i just hate the fact that when i go out i need to know where toilets are just in case!!
ohm well it is better than the terrible sickness / nausea i had with mtx!
sue

wallysatt

suzster wrote:

i just hate the fact that when i go out i need to know where toilets are just in case!!
ohm well it is better than the terrible sickness / nausea i had with mtx!
sue

Yes it is so much better. I hated mtx.

I'm just glad I have a disabled toilet key!!