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  1. Replies
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    Re: Dr. Peter Merkel Philadelphia

    We are seeing Dr merkel tomorrow, God willing.

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  2. Re: ABROGATE trial: Abatacept for the Treatment of Relapsing, Non-Severe, Granulomato

    Has anyone heard more about this study please? Thank you so much. Our Dr. mentioned this an option.

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    Re: New trial for non-severe relapsing GPA

    Anyone have any experience with abatacept?

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    Re: Male pasient and possibilities for a baby

    Thank you. I don't remember seeing that by rtx, but perhaps I missed it. The doctors seemed to say that rtx was an advantage over cytoxin because of this side effect, but perhaps that was on account...
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    Re: Male pasient and possibilities for a baby

    Wishing you well. It is a lot to deal with.

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    Re: Male pasient and possibilities for a baby

    Hope all is well. We just got the news that it is now being said that one should not engage in fathering children when using cellcept.

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  7. Thread: New Memeber

    by Aneinu
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    Re: New Memeber

    I think it's zuritac.

    Wishing you the best.

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  8. Thread: 20 year old son

    by Aneinu
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    Re: 20 year old son

    Thank you so much.

    For the record, he's completing his third year of wegs, so he's very familiar with the preds and it's side affects; that's why he was advocating to start at 20 (not 60).

    Are...
  9. Thread: 20 year old son

    by Aneinu
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    Re: 20 year old son

    The plan, as of now, is to use mmf cellcept for induction and maintenance, together with a healthy dose of preds (starting with 60 and taper to 10).

    God-willing, this should be an answer.

    Sent...
  10. Thread: 20 year old son

    by Aneinu
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    Re: 20 year old son

    Thank you. The second one is always done very slow, but still there was a severe reaction.

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  11. Thread: 20 year old son

    by Aneinu
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    Re: 20 year old son

    New question:

    In the past three years, he has been taking blood and urine tests once a week, once a month, etc., and the doctor has been analyzing every one. He has had three flare ups in the last...
  12. Thread: 20 year old son

    by Aneinu
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    Re: 20 year old son

    Thank you so much. I will ask Dr langford today. He doesn't want the citoxin because of the sterility side affect. The bad rtx reaction was always on the second dose (of the 14 days). He downplays...
  13. Thread: 20 year old son

    by Aneinu
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    Re: 20 year old son

    Ok. So 1000 mgs of preds in the system. Question is regarding the follow up.

    Son is refusing to take more than 20 mgs of preds daily. Also refusing cytoxin.

    What's left? She doesn't wanna use...
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    Re: Another Warrior has lost his Battle!

    May she rest in peace.

    Is it known when she was dx'd?

    Thank you.
  15. Thread: 20 year old son

    by Aneinu
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    Re: 20 year old son

    Thank you. Stable thru the night. Ask labs look very good. Haemoglobin, which was at 15 last month, is now at 13. Still a good number, but a decrease nonetheless. They will start steroids shortly....
  16. Thread: 20 year old son

    by Aneinu
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    Re: 20 year old son

    His chest went from "so-so" to hurting pretty bad in a few hours. Heading to er.

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    Re: Sometimes it just honestly sucks !!!

    Understand completely. I have the same cycle.

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    Re: Rituximab V Azathiioprine (Imuran) advise

    Sorry to hear about the flare up. My son is so good at this denial stuff. He lives by it, until he can't any longer. Like today.

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  19. Thread: 20 year old son

    by Aneinu
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    Re: 20 year old son

    Looks like another flare up. Chest, skin and joints. Last one was last summer. Dr said to head to er this evening. This time, besides everything else, we have issues with the clinic accepting private...
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    Re: High calcium in urine

    Sorry to hear that. Hope things become clearer and you begin to feel better.

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  21. Re: Looking for a Rheumatologist in the Cleveland Ohio area connected with UH

    God speed to you. My son developed the condition several years ago and was treated as a minor in uh. But when we needed to treat him aa an adult, we switched to cc and Dr langford (together with Dr...
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    Re: Cataract Surgery

    Wishing you all the best.

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  23. Re: Hello! new member but have had WG for a long time!

    Truly amazing!
    So glad to hear that you are doing well now.
    It is inspiring to others.

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    Re: Confirmed Diagnosis

    We have found that rashes can be associated with weg flare up. It also may be a delayed reaction to the rtx. The doctors were not able to confirm by us.

    Wishing and hoping that you feel better.
    ...
  25. Thread: My introduction

    by Aneinu
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    Re: My introduction

    Hi Ellen,

    Sorry to hear about your ordeal.

    Yes, Alysia is correct. My son (22 now) had four bouts of rtx. Two of the times (and perhaps a third) they couldn't finish the dose because of his...
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