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Leflunomide Options
hen
#1 Posted : Saturday, March 10, 2012 9:11:31 AM Quote
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Joined: 12/7/2009
Posts: 262
Hi all,
just after any input / experience regarding leflunomide please. Has anyone taken this and had problems with diarrhoea? I know it is listed as a common side effect but just wondering whether it is a reason to stop taking it or whether it can settle with time.
As some of you know, I had to stop Enbrel about 6 months ago due to suspected infection in my knee replacement and secondary osteomyelitis. During that time, I have only been allowed Depo injections every 6 weeks and no other treatment so the RA has been rampant. I began taking leflunomide 3 weeks ago as this is my only option drug wise at the moment so I'm really desperate to be able to tolerate it.
I have had several bouts of diarrhoea which seem to be getting a lot worse over the last few days. Every time I eat I need the loo, in a hurry! Blushing could really do without this on top of everything else, and I cant really afford to lose any more weight.
Any thoughts?
Thanks, Diane x
Naomi1
#2 Posted : Saturday, March 10, 2012 11:32:36 AM Quote
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Joined: 9/3/2011
Posts: 717
Location: Torbay
Dear Diane
I can't offer any advice but do sympathise as I've had some very bad side effects and as a result had to stop taking 2 dmards. I am now on hydroxychloroquine and so far so good. I know how frustrating and draining it can be to try out drugs, wait months for them to work and then find that they are causing problems. I think professional advice is needed about your diarrhoea. It might be one of those symptoms that settles as your body adjusts or it might be a real cause for concern. Do you have a rheumatology nurse you can phone. My treatment centre at Torbay Hospital has nurse lines open every afternoon on week days and the nurses there have been really good at responding to my issues with side effects. I wish you luck and hope that someone else on here can answer your questions about the diarrhoea. Best wishes from Naomi.
zena_mary
#3 Posted : Sunday, March 11, 2012 9:40:12 AM Quote
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Joined: 1/21/2012
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Location: Powys
Hi Diane,
Sorry you are having such problems, but I think Naomi is right, get in touch with your rheumy nurse if you can, otherwise ring your G.P who should be able to get in touch with the hospital for you, but hopefully she might be able to suggest something that does not mean you have to come off leflunomide. I was on it for a while but did tolerate it quite well. you could well do without this problem. Hope you get it sorted soon.
Zena x.
Rose-B
#4 Posted : Sunday, March 11, 2012 4:27:14 PM Quote
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Joined: 4/20/2010
Posts: 1,749
Location: Somerset

Hello Diane,

I have had lelfl. before and I did not suffer this, however, these drugs do effect
us all differently. Def tomorrow ring for the RA nurse and get sorted.


RoseThumpUp
hen
#5 Posted : Monday, March 12, 2012 8:44:25 PM Quote
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Joined: 12/7/2009
Posts: 262
Thanks girls.
I didnt take the leflu over the weekend. Spoke to my rheumy nurse this morning who advised I stay off it until things return to normal and then re commence it. If the same happens, I won't be able to continue with it.
I feel better in that department today so if the improvement continues tomorrow, I'l try again.
Thanks for listening
Diane x
LynW
#6 Posted : Monday, March 12, 2012 9:24:39 PM Quote
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Joined: 12/4/2009
Posts: 2,127
Location: Thornton Cleveleys
Hi Diane

Pleased things have settled down with the withdrawal of the Leflunomide. If the problems recur it might perhaps be worth taking half the usual dose to see what, if any, effect that has. I was on 10mg for a while and no side effects but it didn't help my joints and my blood didn't much like it either!

Boy, you are having a difficult time of things of late. I really don't think you and I should be having to do this 'trial and error' thing after all these years RollEyes Think we were the original guinea pigs for some of these drugs!

Lyn x
My son, Ian, completed the BUPA Great North Run on 15th September running for the National Rheumatoid Arthritis Society (NRAS). You can read his story at http://www.justgiving.com/ianlukewilson

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