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  1. Thread: 20 year old son

    by Aneinu
    Replies
    231
    Views
    17,486

    Re: 20 year old son

    Hemoglobin is trending downward so they will be admitting him.

    Sent from my moto z4 using Tapatalk
  2. Thread: 20 year old son

    by Aneinu
    Replies
    231
    Views
    17,486

    Re: 20 year old son

    Well, sadly, once again a full-blown flare up. He has bleeding in his lungs and kidneys acting up again. Ankles swelling as well. He will get high level preds thru infusion. They were on schedule to...
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    Re: Dr. Peter Merkel Philadelphia

    How did it go?

    My son, who now has gpa for four years, had blood in his urine, rashes - they took a biopsy, joint pain - they took a chest scan. Dr is thinking of raising preds from 10 to 40 and...
  4. Replies
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    1,895

    Re: Dr. Peter Merkel Philadelphia

    You might bump into my son there. He's on his way there as well. Lots of joint pains.

    Sent from my moto z4 using Tapatalk
  5. Re: New Patient appointment at Cleveland Clinic

    She is very good though. You're in good hands.

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  6. Replies
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    310

    Re: Got a cold, should we go to doctor?

    Agree with the above. Weg patients (perhaps like most people) don't like to be nagged. They do know when it's a cold and when it's a gpa symptom. Not always do they tell us, however. God bless.

    A...
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    Re: Methotrexate without Prednisone

    Welcome and sorry to hear about your daughter. This disease is tricky and there are no absolutes. It is important to have a doctor that you trust. There is, however, nothing wrong with asking...
  8. Thread: 20 year old son

    by Aneinu
    Replies
    231
    Views
    17,486

    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...
  9. Thread: 20 year old son

    by Aneinu
    Replies
    231
    Views
    17,486

    Re: 20 year old son

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

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  10. Thread: 20 year old son

    by Aneinu
    Replies
    231
    Views
    17,486

    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...
  11. Thread: 20 year old son

    by Aneinu
    Replies
    231
    Views
    17,486

    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...
  12. 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...
  13. Thread: 20 year old son

    by Aneinu
    Replies
    231
    Views
    17,486

    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...
  14. Thread: 20 year old son

    by Aneinu
    Replies
    231
    Views
    17,486

    Re: 20 year old son

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

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  15. Thread: 20 year old son

    by Aneinu
    Replies
    231
    Views
    17,486

    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...
  16. Replies
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    1,895

    Re: Dr. Peter Merkel Philadelphia

    We are seeing Dr merkel tomorrow, God willing.

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  17. 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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  18. Replies
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    Re: New trial for non-severe relapsing GPA

    Anyone have any experience with abatacept?

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  19. Replies
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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...
  20. Replies
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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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  21. Replies
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    1,747

    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
  22. Thread: New Memeber

    by Aneinu
    Replies
    6
    Views
    589

    Re: New Memeber

    I think it's zuritac.

    Wishing you the best.

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  23. Thread: 20 year old son

    by Aneinu
    Replies
    231
    Views
    17,486

    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...
  24. Thread: 20 year old son

    by Aneinu
    Replies
    231
    Views
    17,486

    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...
  25. Thread: 20 year old son

    by Aneinu
    Replies
    231
    Views
    17,486

    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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