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Thread: 20 year old son

  1. #21
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    From speaking to rheumatologist, she does not envision an immediate switch. It is the last thing that they would do. If needed, they will increase steroids or rituximab beforehand. Cytoxin is last choice. She feels that this will not be done in next few days even if eventually needed.



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    I was switched from RTX to CTX cause it works faster. They didn't think I would live long enough otherwise for RTX to help me much. It is also easier to adjust the dosage with oral form of CTX which makes it easier to change it when side effects require it. I did have problems from the CTX and mega steroids but I also believe it saved my life.

    If the situation is not life threatening then RTX or even a less strong drug like MTX or AZA might be enough at the highest dosages along with large amounts of steroids. A GPA expert at Cleveland or Mayo could consult on best course of treatment easily and quickly if your doctors request it. My treating doctors did and I doubt I would have survived without the input from the experts.
    Knowledge is power! Wisdom is using it to make good decisions!

  3. #23
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    Thank you so much for your input. I guess we will know more after the biopsy.

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    When I was first diagnosed, they gave me CTX and high dose pred, the CTX acts like a sledge hammer (this is how it was described to me) to knock it down fast, which it did, I was on it for 3 months, then switched to azathioprine, which I am still on, I was on pred for about 6 months, I have a few aches and pains, but no complaints, my health is quite good, I work full time, and every day I wake up is a good day................ (except Monday morning)
    All the best...

    Regards Woz...

  5. #25
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    Thank you for the response. Let us pray that it stays that way.

    Do you know why they didn't give you rituximab?

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  6. #26
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    So, his CRP went down to 1.5.
    Esp went down to 15.
    Creatinine leveled at 1.4.

    All good numbers, thank God, at least compared to the day before.

    They did a biopsy anyway, which makes sense, and prelim results were like expected that vasculitis was in the kidney.
    They do not yet know the quantity.
    That being said, the doctors stated that if the numbers are basically stable tomorrow, they will probably discharge him.

    On a different note, he did have three nose bleeds today.
    He shrugs it off as dryness, but I think he will need to learn what he needs to monitor, and what is a concern.

    Thanks, like always, for listening, and your valuable input.

  7. #27
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    Good to hear the numbers are improving! Is he feeling better? Sure hope so.

    Your son may want to rinse his sinuses with saline solution when it's cold and dry to keep those tissues moist. You can get a neti-pot and saline packets at any drugstore. That would help to keep the sinuses clear as well. He could also use a small amount of moisturizing cream in his sinuses.
    Pete
    dx 1/11

    "Every day is a good day. Some are better than others." - unknown

    "Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD

  8. #28
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    Quote Originally Posted by Pete View Post
    Good to hear the numbers are improving! Is he feeling better? Sure hope so.

    Your son may want to rinse his sinuses with saline solution when it's cold and dry to keep those tissues moist. You can get a neti-pot and saline packets at any drugstore. That would help to keep the sinuses clear as well. He could also use a small amount of moisturizing cream in his sinuses.
    I think the squeeze bottle kits work better. The drugs stores also sell a product that is much like KY Jelly or Vaseline in consistency to help keep the nasal passages moist.
    Knowledge is power! Wisdom is using it to make good decisions!

  9. #29
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    Dear Aneinu, welcome to the forum. I am sorry that your son suffer so much. and my heart is going out to you.
    you wrote above that they gave him also plasma pheresis ? at what point ? after the rtx ? I ask because if it was after, then it "deleted the rtx. so it is like he never got it.
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

  10. #30
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    Thank you for the well wishes.
    No, it was before the rtx.
    Although his creatinine level did go up today to 1.7, they are not overly concerned, and they will be discharging him today. They will raise the presidone to 80 per day.
    Want him back for labs on Monday.

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