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  1. Thread: 20 year old son

    by Aneinu
    Replies
    228
    Views
    15,635

    Re: 20 year old son

    Good morning, thank you all. His headaches are a bit better, but night sweats still there. He received results from labs yesterday. White blood cells high at 11, but that is his usual. Glucose high...
  2. Thread: 20 year old son

    by Aneinu
    Replies
    228
    Views
    15,635

    Re: 20 year old son

    Thank you. I believe labs are ok. I did not hear differently.

    Sent from my SM-G920V using Tapatalk
  3. Thread: 20 year old son

    by Aneinu
    Replies
    228
    Views
    15,635

    Re: 20 year old son

    No worries at all about the sympathy. Thank you. I love the good advice. He's still having headaches and night sweats although last night thank God he downgraded the aches to medium pain. He probably...
  4. Thread: 20 year old son

    by Aneinu
    Replies
    228
    Views
    15,635

    Re: 20 year old son

    The Philadelphia doctors are concerned about his headaches. However, they do not want to give ibuprofen or strong pain medication, for they are detrimental to the kidneys. If headaches persist, they...
  5. Re: ABROGATE trial: Abatacept for the Treatment of Relapsing, Non-Severe, Granulomato

    Good to hear. Hope it works. Now that I'm looking more closely, this is a different study. The one cited above is for abatacept; the study my son is in is with avacopan. I do not know if they are...
  6. Thread: 20 year old son

    by Aneinu
    Replies
    228
    Views
    15,635

    Re: 20 year old son

    Thank you Alysia, your words are always beneficial.

    The doctors thought it was sinus related, as his markers were good and there was no blood or crusting from the nose.

    It's July 4th weekend...
  7. Thread: 20 year old son

    by Aneinu
    Replies
    228
    Views
    15,635

    Re: 20 year old son

    Thank you. My mistake. He did tell me Tylenol.

    Sent from my SM-G920V using Tapatalk
  8. Thread: 20 year old son

    by Aneinu
    Replies
    228
    Views
    15,635

    Re: 20 year old son

    Hi, how are you all?
    Since my son got married and moved out, I haven't frequented this site much (there should be a law against that).
    He has been doing well, thank God, but his sinuses keep acting...
  9. Replies
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    1,590

    Re: Dr. Peter Merkel Philadelphia

    We are seeing Dr merkel tomorrow, God willing.

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  10. 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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  11. Replies
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    725

    Re: New trial for non-severe relapsing GPA

    Anyone have any experience with abatacept?

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  12. Replies
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    1,657

    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...
  13. Replies
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    1,657

    Re: Male pasient and possibilities for a baby

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

    Sent from my SM-G920V using Tapatalk
  14. Replies
    17
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    1,657

    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.

    Sent from my SM-G920V using Tapatalk
  15. Thread: New Memeber

    by Aneinu
    Replies
    6
    Views
    567

    Re: New Memeber

    I think it's zuritac.

    Wishing you the best.

    Sent from my SM-G920V using Tapatalk
  16. Thread: 20 year old son

    by Aneinu
    Replies
    228
    Views
    15,635

    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...
  17. Thread: 20 year old son

    by Aneinu
    Replies
    228
    Views
    15,635

    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...
  18. Thread: 20 year old son

    by Aneinu
    Replies
    228
    Views
    15,635

    Re: 20 year old son

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

    Sent from my SM-G920V using Tapatalk
  19. Thread: 20 year old son

    by Aneinu
    Replies
    228
    Views
    15,635

    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...
  20. Thread: 20 year old son

    by Aneinu
    Replies
    228
    Views
    15,635

    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...
  21. Thread: 20 year old son

    by Aneinu
    Replies
    228
    Views
    15,635

    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...
  22. Replies
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    2,221

    Re: Another Warrior has lost his Battle!

    May she rest in peace.

    Is it known when she was dx'd?

    Thank you.
  23. Thread: 20 year old son

    by Aneinu
    Replies
    228
    Views
    15,635

    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....
  24. Thread: 20 year old son

    by Aneinu
    Replies
    228
    Views
    15,635

    Re: 20 year old son

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

    Sent from my SM-G920V using Tapatalk
  25. Replies
    33
    Views
    3,751

    Re: Sometimes it just honestly sucks !!!

    Understand completely. I have the same cycle.

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