Leflunomide?

488 Views 6 Replies 6 Participants Last post by RonaB, Oct 4, 2008

mooks

Discussion Starter · Oct 2, 2008

Hey hope you're all well. Saw my Rheum today and although Methotrexate is working great the side effects are too bad so he has started me on something called Leflunomide. Has anyone else taken this? Does it work? Also all the websites say you can't get pregnant for 2 years after taking it...does this mean its really risky to your fertility? Thanks x

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Bullwinkle

· #2 · Oct 2, 2008

Jeez Mooks , you sure know how to take the 'fun' out of this lupie thing. hahaha.
All I could find is ; a) you are still fertile , and b) it sounds like it messes with your eggs and in males, their sperm. Which in turn can cause many defects in your offspring.
So ... best to wait the prescribed time span after coming off the drug , and possible go thru' the body cleanzing of the drug to be doubly sure.

Almost make the arthritis aches and pains sound worth it, sans drugs, hey.

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Clare.T

· #3 · Oct 3, 2008

Hello Mooks
I'm sorry to hear about the side effects of the methotrexate. Maybe a lower dose could be as effective with acceptabe side effects. I have heard on the board of Arava being used a couple of times in lupus when there is a strong RA component to the SLE. Are the joints the main problem ?

That two years is very daunting! I read that it can be 'washed out' and then the waiting time is reduced to 3 months. I didn't see anything about fertility being reduced - as Bull says it's a question of fetal abnormality.

I wonder how long it takes to be effective, how long people take it for and if the two years is regardless of long you take it and I'd want to know if the symptoms are likely to return when one stops taking it. If one stops to get pregnant and the symptoms return what could you use during the pregnancy.

I'd also want to know if my arthritis was showing signs of being erosive and deforming like RA when it is very important to stop permanent damage as fast as possible.
I have read that the main side effects experienced are hair loss and diarrhea - of course there's the usual long list of other possibilities.
I think the doctor should be discussing possible general side effects as part of the whole risk/benefit calculation.

If the arthritis is the main reason for taking it and if it's not deforming and you have no organ involvement I wonder if adding Mepacrine might be enough help. I think pregnancy isn't advised when taking Mepacrine altho Plaquenil is OK but I don't know the ins and outs of that since so few people are on Mepacrine. Maybe it is in fact OK, just the 'lore' is that it is inadvisable, like it still is for Plaquenil although it is in fact used in pregnancy these days without any problems.

Good decision making! I hope you can find the best answer.

Clare

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Raglet

· #4 · Oct 3, 2008

hi there

I have no idea how long you have to wait before getting pg, but make sure you talk to your doctors about it to ensure that you are getting the most up to date information. Two years sounds like a long time to me, so I would definitely double check with the doc.

hth

raglet

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Zoi

· #5 · Oct 3, 2008

Hey Mooks,

I don't know a lot about methotrexate and getting pregnant but I've been told that for both cellcept and cytoxan the waiting period after which one's ovaries would no longer be mutated and the fetus would thus not be at any risk is six months. Two years does sound like an awfully long time... Maybe you could talk to your rheumy and/or gyn about this?

Also my rheumy and internist had both told me at some point that if I ever wanted to start a family I should let them know in order to discuss the possibilty of switching over to imuran (given that disease activity would be controlled by that time of course) which has apparently been proven safe and non-teratogenic for pregnancies. I don't know to what extent this is true or not, but it might be an idea for you to ask your doc?

Hope the leflunomide helps minimize methotrexate's side-effects for you!

Zoi

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mooks

Discussion Starter · #6 · Oct 4, 2008

hey thanks for your replies. Gosh so no one really takes it for Lupus..he did say it was a new idea at st thoms to start using it. i guess my lupus is largely ruled by arthralgia but not actual damaging arthritis. I think I should call my gp or lupus nurse and get some more info. I dont want to take anything thats going to cause long term damage. Argh decisions!!! xxx

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RonaB

· #7 · Oct 4, 2008

Leflunomide

My doctor started me on Leflunomide at the end of June. My biggest complaints with Lupus are joint pain and fatigue. When I was diagnosed I was prescribed Prednisone and Plaquenil. I would have a flare and the pain would get pretty intense so I was put on Methotrexate last year. The fatigue and just awful brain fog was too much so I got off of it after about four months and did okay for awhile.

This summer I went into another pretty good flair and the doctor prescribed Leflunomide. I had some serious stomach problems after one week (for three days) but mostly they've calmed down. My stomach is still some bothersome which I need to talk to my doctor about but not much worse than just taking the Plaquenil.

I haven't had any joint pain, or fatigue and no brain fog. It's like I don't want to say it out loud but for now this medication is working for me. I'm not looking to have children at my age so that's not a worry for me...I thought I read in the patient phamplet that you had to practice birth control while you're on the medication but that there is another drug that you can take to get it out of your system.

We're all so different that what works for one doesn't work for the next person that I just wanted to share because I haven't heard of anyone else really taking this medication and it seems to be working for me.

Good luck with your decision.

RonaB

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