Leflunomide: Hi, This is my first post and having... - LUPUS UK

LUPUS UK

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Leflunomide

dieselmillard profile image
2 Replies

Hi, This is my first post and having read with interest your posts wondered if any one could help me.

Can anyone tell me the effectivness of Leflunomide?

Have been on Mycophenolate for three years with no side effects but joints in right hand are now very swollen and consultant says Leflunimide will have better effect on joints. Not sure I even have Lupus as bloods all come back negative but have butterfly rash, pain, fatigue sun sensitivity, etc etc and no other causes have been found so this has lead me to be diagnoised with Lupus.

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dieselmillard
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Bakbre profile image
Bakbre

Hi there

I was put on to Lefludomide 8 months ago and unfortunately it has not worked for me at all.

Previously I was on Azathioprine (no effect) and Methotrexate (made me ill). I have also been on Hydroxychloroquine right from the start. In between I am usually put on a course of steroids for some relief.

Unfortunately as with all these drugs some work for some people but not for others. The problem is they can take anything up to 6 months to have any effect at all. If they work that's great but if they don't that's 6 months wasted and you have to start all over again with something else.

I am afraid that the only way is for you to try Lefludomide and hopefully you will get on with it and it will work.

Good luck and I hope you feel better soon.

Freddi1019 profile image
Freddi1019 in reply to Bakbre

Wow...the other reply is so true. Laflumonide was added to my meds almost a year ago..and it works or should I say worked. Who knows with Lupus. Doctor added it decreased my methotrexate by 2 pills. And it seemed to work, but it does take time. I demanded my VIT D be checked and I needed to increase my daily dosage. Regular blood makes sure it is not messing with kidney/liver. I will kick myself for saying this be patient...and keep a journal. Research and bug your doctor. I switched to an anti-inflammatory diet and it was AMAZING...felt GOOD....fell off it and problems and pain increased....We are lupus WARRIORS...keep fighting for yourself...be the BEST advocate for YOUR management of this disease....remember doctors PRACTICE medicine!

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