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Thread: 20 year old son

  1. #191
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    Default 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 group insurance.

    Things will be well. God has a plan.

    Sent from my SM-G920V using Tapatalk

  2. #192
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    Default Re: 20 year old son

    Quote Originally Posted by Aneinu View Post
    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 group insurance.

    Things will be well. God has a plan.

    Sent from my SM-G920V using Tapatalk
    So sorry... sending you prayers (psalm 121). Please update us.
    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.

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  4. #193
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    Default Re: 20 year old son

    Quote Originally Posted by Alysia View Post
    So sorry... sending you prayers (psalm 121). Please update us.
    His chest went from "so-so" to hurting pretty bad in a few hours. Heading to er.

    Sent from my SM-G920V using Tapatalk

  5. #194
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    Default Re: 20 year old son

    Quote Originally Posted by Aneinu View Post
    His chest went from "so-so" to hurting pretty bad in a few hours. Heading to er.

    Sent from my SM-G920V using Tapatalk
    Sending you more prayers (psalm 20).

    When you are able, please update us.
    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.

  6. Likes Aneinu liked this post
  7. #195
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    Default 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. Thank you
    Quote Originally Posted by Alysia View Post
    Sending you more prayers (psalm 20).

    When you are able, please update us.
    Sent from my SM-G920V using Tapatalk

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  9. #196
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    Default 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 rituximab, as he experienced bad reaction twice to the second dose. She will talk to the allergists.

    Option that cellcept (mycophenolate) can be used as an inducer, although the experience is as a maintenance drug.

    All thoughts, comments, suggestions are, like always, welcome.

    Thank you

    Sent from my SM-G920V using Tapatalk

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  11. #197
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    Default Re: 20 year old son

    As a mom I hear you. As a patient I hear your son too. The medicine is exhausting and depressing. Wish I could offer you some great solution. For now I am sending you and your son prayers and positive thoughts.
    Masha

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  13. #198
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    Default Re: 20 year old son

    If the flare is not too bad there is a possibility that cellcept will be enough, although not as strong as ctx or rtx.

    Why does your son refuse to take ctx ? (I can understand why he refuses the higher pred...) I was never on it, but know that others took it, by IV or pill and it was not too bad.

    Maybe the allergists will have an idea how to prevent reactions for rtx ? Maybe in much slower pace and while being on high steroids ? I read about weggies getting rtx very slowly, even for 12-15 hours.

    I read somewhere about a weggie who was given other biological treatment. Not sure which one, remicaid or humira. There was a thought to switch my treatment from rtx to one of those 2, when my colitis was too bad, but it remained a thought only. My wg dr. said it can work but not as good as rtx.

    Sending you more prayers (psalm 91).
    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.

  14. Likes Aneinu liked this post
  15. #199
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    Default Re: 20 year old son

    Quote Originally Posted by Alysia View Post
    If the flare is not too bad there is a possibility that cellcept will be enough, although not as strong as ctx or rtx.

    Why does your son refuse to take ctx ? (I can understand why he refuses the higher pred...) I was never on it, but know that others took it, by IV or pill and it was not too bad.

    Maybe the allergists will have an idea how to prevent reactions for rtx ? Maybe in much slower pace and while being on high steroids ? I read about weggies getting rtx very slowly, even for 12-15 hours.

    I read somewhere about a weggie who was given other biological treatment. Not sure which one, remicaid or humira. There was a thought to switch my treatment from rtx to one of those 2, when my colitis was too bad, but it remained a thought only. My wg dr. said it can work but not as good as rtx.

    Sending you more prayers (psalm 91).
    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 everything, and doesn't regard it as much of a concern.

    I will bring up your other options today, and I will discuss the slow pace administering of the rtx. I thought that in both instances, they sped it up after the first several hours.

    Sent from my SM-G920V using Tapatalk

  16. #200
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    Default 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 months.

    Why was there not one indicator in the tests that something was amiss? Does the flare occur so fast? Under a microscope, there was always minimal blood in the urine, but never increased.

    I think it's an interesting question.

    Sent from my SM-G920V using Tapatalk

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