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Type: Posts; User: Alysia

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    Re: Hello from Shawny

    Welcome to the family, Shawny.

    Sorry about your disease and about your divorce (you wrote about on another thread). I hope you can find a way to reduce the stress and get enough support. We are...
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    Re: Methotrexate without Prednisone

    I know weggies who are on immune suppresed meds without pred, and to be honest, I am jealous at them.

    I am on the pred since 2008 and will never be able to quit it. Started on 60mg because of...
  3. Thread: Transplant

    by Alysia
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    Re: Transplant

    Thanks for the update. I googled tacrolimus and found out its an immune suppresed med to help with transplants.

    Praying it can give an explanation and that the change will improve the kidneys'...
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    Re: 1000mg or 2000mg rtx ?

    Thanks for sharing. I guess you will get rtx 500mg 4 times ?

    Many times the labs don't reflect how much the wg is active. Only in 2 flares I had a dramatic labs' results. Wg can also be...
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    Re: 1000mg or 2000mg rtx ?

    I used to get the symptoms coming back also about a month before the next infusion. That was when I was on 2000mg. Now on the 1000mg the symptoms have started much earlier. I had only 2 and half...
  6. Thread: Transplant

    by Alysia
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    Re: Transplant

    So sorry the numbers are down again. Is there any explanation the docs give to the fluctuations ?
    Praying for you always, Pete, please update us how are you doing.
  7. 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.
  18. 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.
  19. 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...
  20. 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:
  22. 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
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