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Thread: New to Wegener world

  1. #21
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    Default Re: New to Wegener world

    Quote Originally Posted by seied View Post
    Hi Alysa,

    Someone please correct me if I'm wrong, but I don't think there's a protocol for daily Mtx.

    https://www.pharmacytimes.com/public...2/2005-02-9297

    Another:
    http://theconversation.com/weekly-do...en-daily-60322

    Ed.
    I guess you are right. (Although my dr. said that daily dose was also ok.)
    Alysia
    dx 2008


    Here, I found my sweet love, my beautiful Phil
    https://www.wegeners-granulomatosis....emorial-thread
    During long scary weeks at the hospital, my sweetie used to tell me, what I keep on telling him:"your love is what I live on".
    Rest in Peace, my brave Batman, take care of your weggies from heaven, and get a place ready for me, next to you, until we meet again.

  2. #22
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    Default Re: New to Wegener world

    Quote Originally Posted by Alysia View Post
    I guess you are right. (Although my dr. said that daily dose was also ok.)
    Maybe you'd want to give Mtx in pills another try.
    A combination of weekly Mtx and a daily low dose prednisone might put an end to a smoldering GPA.

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  4. #23
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    Default Re: New to Wegener world

    Quote Originally Posted by seied View Post
    Maybe you'd want to give Mtx in pills another try.
    A combination of weekly Mtx and a daily low dose prednisone might put an end to a smoldering GPA.
    Thank you for being thoughtful. I got the rtx as both maintenance and treatment. I hated the mtx, it caused me hair falling and many UTI's. It worked but not on the wg.
    Alysia
    dx 2008


    Here, I found my sweet love, my beautiful Phil
    https://www.wegeners-granulomatosis....emorial-thread
    During long scary weeks at the hospital, my sweetie used to tell me, what I keep on telling him:"your love is what I live on".
    Rest in Peace, my brave Batman, take care of your weggies from heaven, and get a place ready for me, next to you, until we meet again.

  5. #24
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    Default Re: New to Wegener world

    Quote Originally Posted by Alysia View Post
    Thank you for being thoughtful. I got the rtx as both maintenance and treatment. I hated the mtx, it caused me hair falling and many UTI's. It worked but not on the wg.
    Well, keep in mind that when you tried it before it was dispensed wrong, so the negative side effects might not be due to the Mtx itself but the wrong daily dose.

    Also, I'm taking folic acid every day to prevent my hair from falling off and reduce side effects of Mtx. With the exception of fatigue, it works for me perfectly. I have not lost my hair. I also didn't catch any infections -including cold/flu in an entire year.

    I did suffer a flare up right after my (former) rheumatologist made me taper off prednisone completely and would not change the course of treatment to stop the flare up. I was down to a safe 3mg/day back then and now I'm having a very hard time even at as high as 20mg/day. He's no longer my doctor because of that. I'm down to 10mg/day and still have some roving arthritis. I'm hoping I can get back to 3mg/day again.

    I would also say that your daily Rx of Mtx is a medical mistake. I'd be careful with that doctor.

    Ed.

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