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Thread: 20 year old son

  1. #11
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    Quote Originally Posted by woz View Post
    Hi Aneinu, welcome to the wegs family, sorry to hear that your son has wegs, but at his young age, he should bounce back quick now the doctors know what he has. The people who hang out here, are a wealth of knowledge, compassion and understanding, the more you know, the better you will feel, it's very confronting at first, but with a good team of doctors, family support, and information on hand, your son will get back to normality soon.

    All the best Woz...
    Thank you so much.
    We definitely are looking forward to that day.
    It's as if life begins again.
    With the grace of God, it will.

    Sent from my SM-G920V using Tapatalk

  2. #12
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    Good morning.
    A bit confusing today.
    His creatinine level rise to 1.5. Dehydration had been ruled out. They wanna do ultrasound of kidney today and biopsy tomorrow 1130 (if numbers don't improve). There can be two causes: either vasculitis or due to medication. They did switch some medication. Additionally, there are two inflammatory marks that they are watching. When he was admitted his crp was 17; after steroids it decreased to 1.1, but today it went up to 2.3. Also, his sedimentation rate is at 17. The alternative treatment would be cytoxen, which I am not pleased about.
    Thank you

    Sent from my SM-G920V using Tapatalk

  3. #13
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    Creatinine is at the high end of normal. (Mine is typically at this level with slight kidney damage.) CRP is well within normal. Sedimentation rate is still pretty high. Hope the ultrasound proves negative and they don't have to do a biopsy.

    Cytoxan is often used to induce the inital remission (along with high dose steroids). Should be on it no more than 4 - 6 months. Make he stays well-hydrated while on cytoxan and that he urinates whenever he feels the urge as the metabolates of cytoxan are hard on the bladder.
    Pete
    dx 1/11

    "Every day is a good day. Some are better than others." - unknown

    "Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD

  4. #14
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    Thank you so much.
    On both the creatinine and crp, they are worried about its direction.
    Thank you for your wishes on the ultrasound.
    I am worried about side effects with the cytoxin.
    Should I be?
    I know his health is the most important issue at hand, but is this elevated step necessary at this time?

    Sent from my SM-G920V using Tapatalk

  5. #15
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    Quote Originally Posted by Aneinu View Post
    The alternative treatment would be cytoxen, which I am not pleased about.
    Cytoxin (Cyclophosphamide) is not unusual as a treatment for Wegs. It's what I took immediately after diagnosis and for the first year and a half (150 mg).

    Mostly, relax... you gotta stay calm and informed, which it sounds like you're doing by knowing test results. Don't expect instant improvement or be discouraged on a daily basis, especially when the test results show dramatic improvement. Consider pushing the hospital to do ALL the tests they can do. Make them use every piece of diagnostic equipment they own. That's a good thing since it becomes more difficult once he's discharged.

  6. #16
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    Quote Originally Posted by Aneinu View Post
    I am worried about side effects with the cytoxin. Should I be?
    Yes. It's a dangerous drug but far less dangerous than untreated Wegener's.

    Read this...

    http://www.wegeners-granulomatosis.c...html#post98791

    And there are plenty more stories like it to read here.
    Last edited by Birdie; 11-18-2015 at 06:02 AM.

  7. #17
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    yes; thanks.
    staying calm is important.
    a question would be if this hospital exhausted their diagnostic possibilities; would a transfer be an option?

  8. #18
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    Agreed; he is being treated with rituximab; the question was if he should be given cytoxin as well.
    Obviously, if there's no alternative, it must be done.

    Thank you

  9. #19
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    Quote Originally Posted by Aneinu View Post
    would a transfer be an option?
    That's always an option.

  10. #20
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    Quote Originally Posted by Aneinu View Post
    Agreed; he is being treated with rituximab; the question was if he should be given cytoxin as well.
    Obviously, if there's no alternative, it must be done.
    I doubt they'd do both. It takes a some time no matter what the medication.

    Cytoxin is the dangerous method. It's used like a hard knock down punch to knock the Wegener's out of a patient. Once it's under control, in a few months or 1 1/2 years in my case, then something else is used for maintenance.

    Pete is in your neighborhood and often raves about his expert Wegener's care. That's what you need, Wegener's experts. Wish I had em.

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