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  1. Thread: Transplant

    by Alysia
    Replies
    206
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    19,251

    Re: Transplant

    How are you doing so far, gilders ?
  2. Thread: Need a referral

    by Alysia
    Replies
    4
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    83

    Re: Need a referral

    Hi Nancy,

    During my first 4 years of wg, my docs who were totally ignorant about how to treat wg, treated me the way you do: by pred only, plus 1-2 years of bactrim. They had thought that I didn't...
  3. Re: My Rhumy and I started me on High doses of THC and CBD oil

    Thanks for sharing, my friend. Please update us how it goes. (Not that I am going to try it). Please be careful and keep an eye on yourself.
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    Re: Azathioprine - Mycophenolate mofetil

    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.
  5. Thread: Transplant

    by Alysia
    Replies
    206
    Views
    19,251

    Re: Transplant

    Thanks for the update.

    Thanks God the swelling had decreased. I am glad that after all you are doing better, even exercising.

    That's interesting what you wrote about how the creatinine is...
  6. Thread: Help

    by Alysia
    Replies
    8
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    345

    Re: Help

    Hi angel,

    I understand that you need finnacial help so very much.. I am sorry about not being able to help...

    are you still in the hospital ? How are you doing ? Do you have anyone who helps...
  7. Thread: Transplant

    by Alysia
    Replies
    206
    Views
    19,251

    Re: Transplant

    Any news, Pete ? Praing for you. Please let us know how are you doing....
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    Re: Hydroxychloroquine?

    Hi Sam,

    So sorry the rtx has stopped working well for you. What kind of reaction did you have ? Did you get the 100mg IV pred before in order to prevent reactions ?

    Tagging @Aneinu who's son...
  9. Thread: Help

    by Alysia
    Replies
    8
    Views
    345

    Re: Help

    Hi angel,

    I know that the company of rtx is located in US but since they also sell it to india, they might be able to help you too. Try to send them an email and explain your situation.

    A...
  10. Thread: Help

    by Alysia
    Replies
    8
    Views
    345

    Re: Help

    Hi angel,

    I am so sorry that you flare... :crying:

    Please check in the following link - this is the company who makes rtx. Try to check your options and send them an email. Tell them about...
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    Re: Azathioprine - Mycophenolate mofetil

    Hi Angela,

    I was never on the Mycophenolate.

    Actually most of our meds have scary list of side effects.

    But I suggest you to ask for rituximab, for 2 reasons:

    1. Less side effects for...
  12. Thread: Transplant

    by Alysia
    Replies
    206
    Views
    19,251

    Re: Transplant

    We continue to pray, Pete.
    Can this change be related to the decrease in the pred ? And if so, would more pred help ?
  13. Thread: Went to duke

    by Alysia
    Replies
    10
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    257

    Re: Went to duke

    Hi Masha,

    I got 2000mg rtx split into 2 IV 2 weeks between since 2013. This week I went for another rtx round but my wg dr. And me have decided to try only 1000mg this time, because I am doing...
  14. Thread: Went to duke

    by Alysia
    Replies
    10
    Views
    257

    Re: Went to duke

    Thanks for sharing, Masha. I am glad you've found a professional wg dr. I hope she will help you to feel better. I keep you in my thoughts and prayers.

    A note: Wegener was Nazi. Please read here...
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    Re: Happy Birthdays Thread

    Happy Birthday NatriceRomeo. Thank you for your kindness, friendship and support. I hope you had a great day :hug3:
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    Re: Hello from another new member

    Labs every 2 months are indeed not enough if you are not in remission. Ask to do your labs once a month until you will see that your wg is calming down.

    The most important one to check in your...
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    Re: ear issues with Wegener's

    Welcome to the forum, Doris.

    In my case, mtx didn't work. And my C-anca or Pr3 are positive when my wg is active (flaring or smoldering). So I think that your husband's wg is active more or less,...
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    Re: Hello from another new member

    Welcome to the family, Tricia.

    C-anca and Pr3, if positive are indicators of wg activity. If they have become higher, it means that the wg is more active. It goes together with what you tell,...
  19. Thread: Nine years

    by Alysia
    Replies
    6
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    195

    Re: Nine years

    Thanks for sharing your story, and thank you for being with us. Happy Anniversary. How are you doing these days ?
  20. Thread: Transplant

    by Alysia
    Replies
    206
    Views
    19,251

    Re: Transplant

    Great news, Pete, our prayers are heard - Praise The Lord, happy dance :hug3:

    I love to read how you explain the results' meanings and analyze them. This thread is a treasure for anyone with...
  21. Thread: Dsap

    by Alysia
    Replies
    4
    Views
    173

    Re: Dsap

    Hi Arleta,

    I've never heard about it. Just googled it now. They write that it is genetic. My sister has another rare skin condition which is genetic. She was born with it. It is called...
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    Re: Happy Birthdays Thread

    @annekat you did tag me in this post. If it becomes blue after you send it, then the tag works.

    If you insist on picking a date for my birthday, please do it on Sunday Easter (every year it comes...
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    Re: Happy Birthdays Thread

    Top secret indeed :wink1:

    And yes, someone does know. But keeps my secrets safe :flapper:

    @gilders you do remember @pberggren1 's birthday and it means so much to me :wub:
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    Re: Happy Birthdays Thread

    Happy Birthday dear mishb. It is good to know that we have you here and near.

    May your birthday be pain free, full of joy, good health, peace and love.

    Keep smiling, we love you :wub:
  25. Replies
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    Re: Happy Birthdays Thread

    Happy Birthday me2. Thank you for sharing with us your wisdom and experience of being weggie for so many years... I hope you have a great day !
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