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Thread: Leflunomide

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    Default Leflunomide

    My doctor put me on Leflunomide in May (I had my last Rituxin treatment in 2012). He was hoping that this would prolong having another one. I can't tell you how great a move this has been. Went to my throat doctor last week and he said there was no inflation showing, there had always been some before. Not only do I feel good but I have been so much more active. (I am on 5mg Pred., bactrim, nexium). I think maybe he has found another treatment for Weg's. I see him at the end of July and can't wait to see my bloodwork numbers.

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    Hi.
    my doc also wanted me to take it (it is also called Arava) but then he decided do do RTX. Im also on pred + MTX.
    can this med replace MTX ?
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

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    Sorry should have said inflammation - it was my undestanding that if MTX did not work that then you would go to the RTX. I was always on cytoxan for a long time then we did the RTX. I had good luck with the RTX but the longest it lasted for me was approx. 14 months. I can't believe how good I feel. My hope is that if everything looks good he will back me off the pred's.

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    Quote Originally Posted by Meredith View Post
    Sorry should have said inflammation - it was my undestanding that if MTX did not work that then you would go to the RTX. I was always on cytoxan for a long time then we did the RTX. I had good luck with the RTX but the longest it lasted for me was approx. 14 months. I can't believe how good I feel. My hope is that if everything looks good he will back me off the pred's.
    I understand that rtx is givven every 6 months. How was it with you?
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

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    I did not have any problems at all - had 4 infusions the 1st time (1 a week), then approx. 14 months later had 2 infusions. It takes a while for the RTX to start kicking in which I really thought that was a miracle drug now the Leflunomide might be beating it -

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    I was taking mtx then my doctor added arava but I ended up w/ a csf leak and two surgeries. I don't believe the arava had anything to do with the csf leak. Now I just had my second round of rtx infusion was feeling better but now feeling sick (Kids had cold). I'm wondering if I should try the arava again in a week? I spend the whole day in bed after I take the mtx. Let me know how the arava works for you. No one heard of using it for Wegener's when I talked about it months before.

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    What is Arava again?
    Phil Berggren, dx 2003

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    Leflunomide belongs to the class of medications called immunomodulators. It is used to treat some of the symptoms associated with rheumatoid arthritis, such as inflammation, swelling, stiffness, and joint pain. It works by blocking the body's ability to produce the immune cells that cause these problem

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    Yup, okay, I know a few that are on it but don't know if it works or not.
    Phil Berggren, dx 2003

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    Just got my blood work back - best it has ever been but my liver test showed "it was not happy". So I started researching and found out that there are multiple things that can cause stress on your liver. I had shingles from Feb thru end of April, on paid meds the whole time. So pain meds can cause issues with your liver. I have been cutting back on sugar and using artifical sweetners, have stopped that now. Eatting more fruit and drinking more water. I am not a big drinker but probably drink 2 glasses of wine a week. Hope it was just the pain meds and not the Leflunomide since everything else showed such a marked improvement. Go back in 2 to 4 weeks for another blood test. Anyone else have liver trouble?

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