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  1. Re: shankxonline - My path to identify GPA and overcome it

    Welcome to the forum. Please remember that being on 40mg pred for 2 months already - should change the symptoms and the tests' results. While trying to figure out your diagnosis the dr needs to check...
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    Re: PR3 Antibodies Elevated

    In my case elavated PR3 is deffinitely an indicator for a flare coming. I wouldn't wait too long. Ask for treatment. If you are on rtx it takes time to start working anyway.
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    Re: 1000mg or 2000mg rtx ?

    Thank you for your kindness. Maybe 1000mg is just not enough for you, like it seems to be in my case ?
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    Re: 1000mg or 2000mg rtx ?

    Did you try Ivig ?
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    Re: 1000mg or 2000mg rtx ?

    Masha, please check this link

    https://kidshealth.org/en/parents/test-immunoglobulins.html

    Immunoglobulins reflect the ability of the immune system to fight infections. IgG is the one my dr....
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    Re: 1000mg or 2000mg rtx ?

    Thank you so much for your comments, my friends.

    But - wait a minute - I was misunderstood: rtx is still effective for me ! I never said that it's efficiency for me is less. No way. Actually the...
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    1000mg or 2000mg rtx ?

    Hi,
    Since 2013 I got 2000mg rtx at every round (2 weeks between) every 6 months. We once tried 1000mg which didn't hold and 2 months later I got the second 1000mg.

    The last round my wg dr. and...
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    Re: Happy Birthdays Thread

    Happy Birthday Pete and gilders. Do you both have birthdays on the same day ?

    Pete, I hope you and your wife are doing better and that you have a great pain free and flare free day :thumbsup:
    ...
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    Re: Happy Birthdays Thread

    annekat, do I remember correctly and you had a blueberry avatar here long ago ?
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    Re: Happy Birthdays Thread

    Happy Birthday annekat and thanks for being with us all the way, sharing your wisdom and experience, being such a sweet and kind friend. We love you :wub:

    May you have a wonderful day, a long...
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    Re: Prednisone Reduction

    Sorry about the flare Pete and about your wife's disease. Stress is a triger for flares. Sending prayers for both of you. Please update us.
  12. Thread: Flare?

    by Alysia
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    Re: Flare?

    If it's indeed a flare then the pred will make the difference, if the dose is enough. How much did he prescribe ?
    Only in 2 flares my blood tests were not normal.
  13. Re: Wegeners/GPA for 41 years - Transplant for 25 - Having a Relapse

    Welcome to the family, Kim. Your story is amazing and can give hope to many. I tag gilders who had kidney transplant few months ago. I guess he will be glad to read your story.

    If you get rtx...
  14. Thread: My GPA story

    by Alysia
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    Re: My GPA story

    Welcome to the family, Rosie. Thank you for sharing your journey. Thank God they diagnosed you on time.

    As for rtx, there is a protocol of how it should be delievered, first and second time. 2...
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    Re: High calcium in urine

    Maybe your bones are strong because of the many stairways (how many ? I forgot) that you climbe daily on your way to work and back :thumbsup:
  16. Re: new member with question regarding remission

    Welcome to the forum, tac.
    During the first year of my wg, the C-anca came back positive. I searched this issue back then, and found that positive C-anca apears mostly in Crohns' and in wg. You...
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    Re: Azathioprine - Mycophenolate mofetil

    If it seems that cellcept is not stopping the wg activity, I would ask to switch to rtx.
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    Re: High calcium in urine

    Thank you. I wonder, if you stop taking the calcium pills how do you get enough calcium ? The endocrinologist said I need 1000mg per day. That's A LOT.
    I've stopped the calcium pills for one month...
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    Re: High calcium in urine

    Thank you. After reading your comnent I checked with my dr. My parathyroid was checked and is ok
  20. Thread: Transplant

    by Alysia
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    Re: Transplant

    Thanks for the update, Pete. We are happy with every percent of improvement. Take good care of yourself.
    I keep you in my thoughts and prayers and I am looking forward for more updates.
  21. Thread: Transplant

    by Alysia
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    Re: Transplant

    Can it be related to the amount of pred that you take ? Or to stress because of the decline in the numbers ?

    May your numbers be higher, May your kidney behave good, May your days feel good, May...
  22. Thread: Transplant

    by Alysia
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    Re: Transplant

    So sorry the numbers declined again. Thank you for the update.

    I wonder, when the numbers are down do you also feel a change or is it only the numbers which tell about it ?


    Stay strong. We...
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    Re: High calcium in urine

    An update: the calcium in my urine of 24 hours collection has continued to be extremly high, now it came back 432. The norm is no more then 250.

    My endocrinologist said that the high calcium in...
  24. Thread: 20 year old son

    by Alysia
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    Re: 20 year old son

    Any updates yet ?

    Did they check his C-anca and Pr3 ? Is he anca positive ? For me one of the first signs of a flare is when pr3 becomes above the norm.

    Sending prayers.

    שבת שלום
  25. Thread: 20 year old son

    by Alysia
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    Re: 20 year old son

    So sorry about his headaches and night sweats. I am glad they are going to check his head.
    Night sweats can be an indication to wg activity. But can also be related to some virus or infection. How...
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