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    Re: Happy Birthdays Thread

    Hi Jeto, nice to see you here. So glad you have a work. Are you in Macedonia now ? How is your health ? How is your family ? I pray for you. Thank you for your caring. God bless you.
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    Re: Symptoms DURING remission.

    Hi Kirk,

    I am so sorry you are suffering this much.

    I know 3 weggies who suffer from subglotic stenosis even while their wg is considered to be in remission, up to the point where they need...
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    Re: Split decision on diagnosis

    Welcome to the forum, Aaron,

    Lack of G6PD is not related to WG. My father and my 2 sons have it. They don't have WG. However, there are some medicines which you are not allowed to take, one of...
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    Re: In process of being diagnosed

    Some docs use the "limited GPA" concept when there is no kidneys' involvement. But we all know that WG can be life risking even without kidneys' involvement and that it can spread to more vital...
  5. Thread: 20 year old son

    by Alysia
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    Re: 20 year old son

    Thanks for the update. Sounds like Yosef is in good hands.

    I know few weggies who get Ivig treatment.
    Read here for some explanation
    https://www.webmd.com/a-to-z-guides/immunoglobulin-therapy...
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    Re: Happy Birthdays Thread

    Happy Birthday andrew from pberggren1 and from me. We love you and are grateful to you. Thank you so much for keeping the forum working so well and so long. Words are not enough to express our...
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    Re: In process of being diagnosed

    Welcome to the forum, Lea.

    As far as I know, it takes 6 weeks for mtx to start working. Reducing the pred should be careful and gradual according to your improvements.

    The concept of 'Limited...
  8. Thread: new

    by Alysia
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    Re: new

    Meantime I checked with this lady. She said that now her docs think that after all her subglotic stenosis is not caused by WG but is idiopatic. So although she had the diagnosis of WG for few years,...
  9. Thread: new

    by Alysia
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    Re: new

    Welcome to the forum. I know a lady on facebook who has both WG, MS and few other AI diseases. She is an amazing warrior and writes a blog. Here
    ...
  10. Thread: Your Thoughts

    by Alysia
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    Re: Your Thoughts

    Sorry you had to be addmitted because of sepsis. Sounds tough. Thank God you are back home.
  11. Thread: Igg

    by Alysia
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    Re: Igg

    Thank you for the info. The scale in Israel is different. Here the line of the normal is 737.

    Can you please tell us the name of the shots that you are going to get ?
  12. Thread: 20 year old son

    by Alysia
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    Re: 20 year old son

    So sorry Yosef has a big flare again. I hope that being addmitted, he can get the best care possible. Must be hard to stay in the hospital those days, while we have our holidays.

    What is the...
  13. Re: shankxonline - My path to identify GPA and overcome it

    Sherry, for me it took 2 rounds of rtx (6 months between) and 9 months since I started it, in order to see a real difference.
  14. Thread: Your Thoughts

    by Alysia
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    Re: Your Thoughts

    Hi Masha,

    On the contrary - for me the drop from 100 or 120mg on rtx day to 5mg the day after is too much and in the last years (I am on rtx every 6 months since 2013) I even took 20mg the day...
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    Re: pberggren memorial thread

    Thank you so much my friends, for your caring and kind words. You warm my heart. I love you. Thank you for being here.

    I share here things which I don't share on facebook. I don't want to make...
  16. Thread: Transplant

    by Alysia
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    Re: Transplant

    Pete, it is very sweet of you to show yourself in a better way then you really are to your father. And I am also sure that he would give you the whole world if he only could. This is what parents are...
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    Re: pberggren memorial thread

    Thank you from the bottom of my heart, Anne and Michelle for being with me and with my sweetie, back then and ever since. Your friendship and support are priceless and I love you.

    Yesterday, Oct...
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    Re: pberggren memorial thread

    5 years today since my Batman flied high.... I have so much to say but not sure it's the place...

    RIP dr. Phil and come to help us from time to time. We still need you. I do. And I love you. To...
  19. Re: Rituxin - C19 and C20 and length of B cell suppresion

    Sorry you had to go through this tough time, sister. Thank God you are doing better.

    When my pr3 is up, I know it means that wg is active. It can be up even when C-anca is negative. And I had a...
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    Re: Glad to be diagnosed

    so nice to see you here, Geoff, I've missed you. Thank God you are doing well. I am also on the pred almost 11 years, celebrating my wg anniversary in 10 days from today.
    How much rtx do you get...
  21. Thread: Transplant

    by Alysia
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    Re: Transplant

    I think so, too. Keeping you in my prayers.

    Happy New Hebrew Year (starting tonight, Israel time), may it be a year of good health and good news !
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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...
  24. Thread: Transplant

    by Alysia
    Replies
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    28,560

    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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