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Discussion Starter #1
Has anyone been prescribed Leflunomide?
I saw my Rheumy today and after being on Methotrexate for 18 months, he's finally decided it's not working for me. The next step is to go for Rituximab but I have to have failed to respond to 2 treatments before I can get it.
Anyhow, I'm now dropping the MTX and have to try Leflunomide (Arava)- just wonder if anyone else had tried it and what your experiences might be.
Just scared myself witless by looking the side effects up on Wikipedia (yes, I know I should know better!):hehe:
All thoughts gratefully received!
- Aitch
 

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Hi Aitch,

Getting approved for Rituxan can be extremely difficult, even after failing to respond to other drugs. Hopefully the Arava will work for you and you won't have to jump through all the hoops to get Rituxan.

There are some other members on the site that have tried Arava. By responding to your post it will bump to the top and maybe someone will respond.

Take care,
Lazylegs
 

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I had leflunomide, it worked wonders for me, until i contracted meningitis which screwed everything up.
I've tried quite a few different treatments now and have just been given my approval for rituximab as, apart from the leflunomide, they havent worked. Unfortuneately, the leflunomide stopped working :\
From what i was told, the rituximab is a last resort only treatment and you must have failed to respond to all other suitable treatments.

I had no side-effects from the leflunomide...at all.
 

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Discussion Starter #4
Thanks Lazylegs & Vikki - it's heartening to know Leflunomide worked for you and also that you didn't suffer any side effects. Sorry to hear the meningitis stuffed things up. I hope you have much better luck with the Rituximab. :)Thanks very much for sharing your experience.
- Aitch
 

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Leflunomide

Hi, I wanted to give you a response because I know not too many people take this. My doctor started me on this last June to stop a flare. I was able to get off the prednisone and actually felt lupus free. I didn't have any pain, tiredness, or lupus fog.

But in September I started to have this crazy itch every time I took a shower. The itch could last up to an hour and it was unbearable. I changed all my soaps and lotions but nothing helped until I got off plaquenil and the leflunomide. I restarted the plaquenil and two weeks later the itch reappeared. It looked like it wasn't the leflunomide so I'm back on that again but it's not helping like it did when I took both it and the plaquenil. Still I've felt worse.

As for the side effects the only thing I had was stomache ache for 3 days the second week I took it. One side effect is itching but I guess for me that was the plaquenil which I had taken for a year and a half with only stomache upset.

Hope it works well for you. Get your blood work done.

RonaB
 

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Discussion Starter #6
Thanks for sharing your experience RonaB. You're right, it doesn't seem like threre are so very many people on Leflunomide. I'm sorry to hear it worked previously for you and now doesn't. It's tough when you get a taste of 'normal' and then lose it again isn't it? Bit like when they whack you full of steroids and you feel like superwoman... then you taper off and WHAM!:hehe:

I'm getting blood tests next week & then 4 weeks later, by then maybe the Leflunomide might be starting to have some effect. It would be good to get off prednisolone which I've been on since August 07. I take plaquenil too, so I'll look out for any itches!
Thanks again

Aitch:)
 

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heya, i took Arava for about 3 months but it didnt do anything for me so i stopped it. my sle isnt responding to much at the moment though so dont let this think it might not work for you.. on the upside i cant remember having many side effects at all xxxxxxxx
 

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Hi:

I took arava for almost a year. It was really great although I did loose almost all of my hair. The problem for me was that i could not go any higher on the dose, and I was still having break through flares.

I am now on cell cept, and have been for about 2 and a half years. I am up to 2000mg a day and hav e been having break through kidney issues (mild) and now my rhumy is considering cytoxin. He will not go fo rituxen beacuse of the Brain virus and the fact that I am serum negative so it would be very hard to get approved.

I hope that Arava works for you, it made me feel the best I have ever felt since I was dx.

Stephanie
 

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Discussion Starter #9
Thanks Mooks. I'm sorry your sle isn't responding to stuff :sad: I reckon I'm just going to have to be patient & see what happens...
- aitch :)
 

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Thanks Stephanie,
My rheumy didn't seem to be overly confident about Arava working and I got the feeling that he was just giving it to me so I could tick the 'tried and failed two drugs' box. He's already booked me in to discuss Rituximab in April, but I'm pretty concerned about the side effects of that one too (not least the PML risk!).

Oh for the days when the worst thing you ever got was a headache and one paracetamol did the trick!:hehe:

- Aitch:)
 
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