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Thread: Cellcept

  1. #1
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    Default Cellcept

    Can anyone give me any info on it?

    I've been on mtx and aza at different times, but it only gets me to a "smoldering" stage. Doc put me on cellcept about 7 wks ago (2000mg day).

    Doc is hesitant to put me on anything stonger - because I've not had kidney or lung involvement. I've had sinus, eye and cranial nerve involvement.

    The only thing I've noticed is that I have no appetite. Which is ok because it kind of cancels out the prednisone eating!

    Anyway, any info would be appreciated!

    Jen
    "You don't have a soul. You are a soul. You have a body." C.S. Lewis

    http://www.sensinganenemy.com

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    Default

    Quote Originally Posted by godgirl View Post
    Can anyone give me any info on it?

    I've been on mtx and aza at different times, but it only gets me to a "smoldering" stage. Doc put me on cellcept about 7 wks ago (2000mg day).

    Doc is hesitant to put me on anything stonger - because I've not had kidney or lung involvement. I've had sinus, eye and cranial nerve involvement.

    The only thing I've noticed is that I have no appetite. Which is ok because it kind of cancels out the prednisone eating!

    Anyway, any info would be appreciated!

    Jen
    I have been on it (1000mg per day) since last November and it is helped a lot. I am also still doing ritux infusions every 6 mo, but before it was just infusions and I was kinda at those "smoldering" areas too and not fully in remission. I feel like I am closer than I have ever been, but I think it has been a combo of self awareness/disease awareness and I've become a bullet journaling nut (to log my symptoms) but I do think cellcept was very helpful for me.


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  3. #3
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    Default

    Hi Jen. I wasn't on cellcept. But as far as I understand, it is as powerful as mtx and aza, so if they didn't do the trick I doubt it can. I might be wrong. Many weggies get rtx even without lungs or kidneys involvement. Wg smoldering should be stopped before causing damages. When my wg dr wanted me to switch to Arava after mtx, aza and plaquenil didn't work for me, I said enough and demanded rtx. Only rtx stopped the bloody nose that I had for about 5 years and changed my positive C-anca to negative.
    Good luck and please update us.
    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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