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Thread: Azathioprine - Mycophenolate mofetil

  1. #11
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    Default Re: Azathioprine - Mycophenolate mofetil

    Hi everyone.

    Update - Seem to be getting a lot of heartburn constantly from the mycophenolate. Eating and even drinking water brings it on. Read on info that came with medication, not to maybe take antacids I think I will get my dr to verify this so to see if I can get relief from the heartburn/reflux/gord.
    Also Have very chesty cough. No cold or flu symptoms but, so thinking its related to the meds also. Unless Wg is smouldering.

    Not a total fan of this stuff so far. i See my dr in about a week. I guess more time may be needed to see if it's helping or not.

    Anyway fun and games.

    Thanks again,
    Angela.

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    Default Re: Azathioprine - Mycophenolate mofetil

    I get terrible GERD from the meds. My rheumy prescribed Prevacid. Works great. Hope you get better soon!!

    Sent from my SM-G955U using Tapatalk

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    Default Re: Azathioprine - Mycophenolate mofetil

    Hi Angela,

    Have you/can you take Nexium?
    Nexium is recommended when taking high doses of prednisone.
    I take it in the morning of the day I take methrotrexate.

    Ed.

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    Default Re: Azathioprine - Mycophenolate mofetil

    Have Somac which I guess is similar.
    Seeing Dr tomorrow. See what happens. Guessing He will leave me stay on the Myco for a while

    Angela.

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    Default Re: Azathioprine - Mycophenolate mofetil

    Quote Originally Posted by bdawg212 View Post
    I have major nose crusting. There's actually a hole through my septum now. An ENT prescribed a sesame oil concoction made at the Mayo Clinic and shipped to me that really has helped the crusting, and the hole hasn't gotten bigger thank goodness. I just always try to tell myself, it could be worse. I could have lung and kidney involvement again.

    Rituxan didn't work for me, neither did CellCept or methotrexate, and after my pregnancy, neither did azathioprine. The only thing they could use for months to control my high sed and CRP was Prednisone. So I can actually tell you what happens when they run out of immunosuppressants...they try DMARDs. Right now I'm on Plaquenil and somehow, SOMEHOW, it seems to be working. Fingers crossed it continues as I come off the prednisone.

    I will send good vibes that CellCept works for you!!! <3

    Sent from my SM-G955U using Tapatalk
    I tag @freakyschizogirl who also started Plaquenil.
    Btw, there is another wg med that you didn't try yet - it is called Arava. Ask your dr.
    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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    Default Re: Azathioprine - Mycophenolate mofetil

    I actually was on Leflunomide for less than a month. Had a bad reaction to it and had to come off. Sorry, forgot to mention that. I was so wary to start it because of the staying in your system for two years thing, but it was the last one to try apparently.

    Sent from my SM-G955U using Tapatalk

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    Default Re: Azathioprine - Mycophenolate mofetil

    Thanks everybody for your advice and input. Very much appreciated. It is good to compare treatments available and outcomes/side effects.

    Saw my Dr. (Renal) They are leaving me on the Myco to give it more time to see if it helps. I said I felt worse since on it but they want to continue for now. Said about my chesty cough. Questioned whether I have the flu or cold. No I said no flu or cold symptoms at all. They said a lot of flu virus around (winter in Aus). But I know its not that. But oh well. Will continue taking the Myco and see them again in another 4 weeks. I asked about Rituximab but I don't think that will be offered any time soon.

    Will see how I go on the Myco.

    Have a great day and keep on smiling . .

    Angela

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    Default Re: Azathioprine - Mycophenolate mofetil

    Further update

    Went along to see my drs again at Renal Clinic. On the Myco now for a couple of months and My Anca is still rising.
    Also white cell count is a bit too low. They are leaving things as is for now until next visit but mentioned
    stimulating bone marrow injection to try to boost wbc count.
    Apparently considering increasing dosage of the Myco but of course then that could decrease more my wbc count. A vicious circle.
    I have to keep in mind that there are worse things out there affecting other people which helps me get over feeling a little
    down about this journey.

    So I will take time to smell the roses, my roses, and enjoy the little things in life that are great and we shouldn't take for granted.

    Take care all,

    Angela.
    Remember to take time to smell the roses .......

    And keep on smiling

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    Default Re: Azathioprine - Mycophenolate mofetil

    Quote Originally Posted by Angela View Post
    Further update

    Went along to see my drs again at Renal Clinic. On the Myco now for a couple of months and My Anca is still rising.
    Also white cell count is a bit too low. They are leaving things as is for now until next visit but mentioned
    stimulating bone marrow injection to try to boost wbc count.
    Apparently considering increasing dosage of the Myco but of course then that could decrease more my wbc count. A vicious circle.
    I have to keep in mind that there are worse things out there affecting other people which helps me get over feeling a little
    down about this journey.

    So I will take time to smell the roses, my roses, and enjoy the little things in life that are great and we shouldn't take for granted.

    Take care all,

    Angela.
    If it seems that cellcept is not stopping the wg activity, I would ask to switch to rtx.
    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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