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Date: 30.09.2011
From: mads

Subject: Leflunomide

HI everyone - i feel like a midnight stalker, only coming on here in the wee hours checking out the boards and seeing how everyone is doing. I haven't been posting too much over the while as i have nothng new to say and it would just be a repetitive moan. But it is reassuring and uplifting to read the posts. I am going on to a drug called leflunomide - has anyone heard of it or used it? Metx didn't work for me.
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Date: 30.09.2011
From: kirst

Subject: Re: Leflunomide

ive heard of it. Was on MTX... Im going onto sulphasaline and if that one doesnt suit me leflunomide is the next one on the list (unless im alowd anti-TNF).
Hope someone will come on and tell you more about it x
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Date: 30.09.2011
From: mads

Subject: Re: Leflunomide

kirst i am in the same boat metx didn't work for me so they are trying me on the Lef. And then adding another in about 6 weeks time - plaquenil if it is not working the best. It doesn't seem to be a popular one does it? can't remember anything about it when we were running through the dmards first time around
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Date: 30.09.2011
From: louloubelle

Subject: Re: Leflunomide

Hiya mads; i have PA and was on leflunomide until 6 weeks ago. I was only on it for 3 months but I decided that I wanted to go back to anti-tnf which goes against NICE guidelines (I've had a baby and breast cancer this year and the guidelines say you cannot go back on anti-tnf until yuo have been free from cancer for 10 years).

I found that leflunomide mega improved the arther. I would say that without meds the pain was a 9 or 10 out of 10 all of the time. With anti-tnf it is usually 0 or 1 out of 10 but only ever goes up to a 3 or 4 when i'm really not well. With leflunomide I would say it kept me at a steady 5 with days at a 3 or 4 and others at a 6 or 7!

I hope my weird numerical way of describing it makes sense. I'd be happy to answer any other questions you might have.

Lou x
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Date: 30.09.2011
From: Rachel

Subject: Re: Leflunomide

Hi, all I too am going on leflunomide as meth isn't working. I'm a bit worried as my rheumy wants me to overlap the two for 3 months. Also, we're trying to decide whether to forget having at family (at 39 time is running out). Having to have it out of your system for 2 years before conceiving would pretty much mean game over for us. Louloubelle - your comments are reassuring. Thanks, I had posted at the beginning of the week but go no responses.
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Date: 30.09.2011
From: mads

Subject: Re: Leflunomide

oh thanks alot, louloubelle, you have such a lot going on i understand your score perfectly - i think if i have a five i would be happy, well i say that now when i feel i am scoring 9 or at the minute. mind you i am on oral steroids and really feel they are going to have me painfree in days don't know why i think that since the injections never really worked. itmust be extremely hard if you have a baby or indeed trying to get pregnant. i have two at 6 and 10 and i feel bad that i can't do more with them - they don't really care.
could you go on another dmard rachel, do the rheummy team know that you want to start a family
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Date: 01.10.2011
From: louloubelle

Subject: Re: Leflunomide

Hiya mads. I would have stayed on leflunomide if i'd never had anti-tnf. It seemed daft to me to compromise at a 5 when i knew i could be a 0 as i know how well anti-tnf works for me.

Rachel, have you tried sulfasalazine? This is safe to use during pregnancy so you can be on it while trying to conceive. Also, if you do try for a baby just have a word with your rheumy about any anti-inflammatories you may be on - I wasn't told until I'd been trying for a baby for nearly a year that it can affect when you ovulate - i stopped the anti-inflams and 2 months later I was pregnant.

Having a baby with arther isn't has hard as i thought it might be, although now Oscar is one and can't walk yet he is so heavy it can be really hard work. Although he understands some of what i say to him now and i can actually talk him through getting up and helping me lift him :-)

I'll be happy to answer any questions anyone has

lou x
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Date: 02.10.2011
From: Rachel

Subject: Re: Leflunomide

Hi Mads, yes they started me on sulphasalazine which made me really ill, next step was methotrexate and now prescribed leflunomide. I had discussed the family thing with my Rheumy last December and he must of forgotton. I didn't make the connection with the drug until I got home and read the leaflet. To be honest I'd be quite happy to adopt. My RA isn't under control and the thought of being off meds for all that time doesn't appeal plus the potential damage that could happen while I'm off them. It's really hard to make a decision when you can't get concrete answers, everything seems to be ifs, buts and maybes! Hope it gives you some relief, in the meantime my prescription is still sitting on the side while I try and decide whether to go ahead with it! Take care x
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Date: 02.10.2011
From: mads

Subject: Re: Leflunomide

Rachel you poor thing - horrible situation to be in - the rheummy nurse goes through the leaflets with me but i had never heard of the leflunomide until then.
You sound really pragmatic about having a baby or adopting, a great outlook to have. It is horrible when you can't get this ra under control and i so agree we are left in a kinda limbo when we don't have any answers.
My steroids appear to be making a difference - well the swelling and stiffness appears to be lessening but the pain is still quite sharp.
I had a really lazy day today - my 6 year old and i made a big pot of vegetable soup and we sat around drinking it all day long. Pouring down here all day so the fire was lit and the telly on. Anyway, i hope you get some advice and come to a decision.
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Date: 10.10.2011
From: Rachel

Subject: Re: Leflunomide - Msg for Mads

Hi Mads, I just wondered if you went ahead with the Leflunomide? I went ahead and started last Tuesday, apart from feeling a bit sick I've been ok. I've got to take my methotrexate today so I'm a bit nervous of taking the two. Hope you're doing ok with it x
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Date: 10.10.2011
From: Teresa

Subject: Re: Leflunomide

Hey there :)

I have been taking Leflunomide for about 4 months now for PA. I have noticed about a 40% improvement in the pain and stiffness.

The only side effect I have is that it raised my blood pressure and now I have to take another tablet for that. But all is good apart from that.

I hope it works for you :)
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Date: 13.10.2011
From: lynnr

Subject: Re: Leflunomide

Hi I have been told I have to go on leflunomide and I'm just reading all the side effects and it seems worse than wen I read up b4 put on mxt any advice would b appreciated thanks
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Date: 13.10.2011
From: Rachel

Subject: Re: Leflunomide

Hi Lynn, to be honest I was really worried and at the moment I'm taking leflunomide with 15mg methotrexate (my rheumy wanted an overlap as my inflammation markers/pain etc is still bad). I was/am still nervous of taking it, but have to say after my first week, apart from feeling a bit nauseous and particularly wiped out on methotrexate day I've been ok. Everyone reacts differently to these medications. I am careful and don't drink at all but so far so good. It's too early to tell yet if its having any effect. Hope it helps if you go ahead x
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Date: 13.10.2011
From: mads

Subject: Re: Leflunomide

Hello everyone again - thankyou all for the great info that you give me. I have not started my leflunomide yet as i have to get deep root canal work done and the dentist can't fit me in until Nov. I have read up on it and i actually prefer the sound of it to Metx, which i had to be taken off due to side effects. I am on a decreasing dose of steroids and at 10mg they are loosing their impact. Very tired and sore - the 20mg was great - i glimpsed normality and want to get back to it as soon as i can.
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Date: 14.10.2011
From: lynnr

Subject: Re: Leflunomide

I am picking up my leflunmide today so I will start them bit later I am a bit nervous but was same with mxt so here's hoping they help me out hi mads can they not be taken when u need work done at the dentist??
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