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Thread: 20 year old son

  1. #101
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    Welcome, Debbie, and I agree, more people would see and respond if you start a new thread under New Member Intro. We are already in that category talking about Aneinu's son, so all you have to do is go to top of this page and click on New Member Introductions, click Post New Thread, and you'll have a window in which to tell us about yourself, your son, and his situation. No need to move anything, really, unless you want to copy and paste. We are concerned about your son and would like to hear more. It doesn't always happen that fast and dramatically, but it sounds like they pulled him out of the immediate crisis and are doing the right things. We'll wait to hear more...
    Anne, dx'ed April 2011

  2. #102
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    "require" sinus surgery.....I don't know how to edit from here.

  3. #103
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    Well it's been a while.
    Lots of new threads since I last posted.
    Hope and pray that everyone is on the recovery road.

    My son is turning 21 this month. After his initial dose of rituximab he was able to lower his prednisone to 5mg per day. He was getting back to himself. He did rewrite sinus surgery several weeks back, but they think that was unrelated. He was looking better, as his weight and puffiness was going away. Yes, past tense. Two weeks ago, he started once again experiencing joint pain, hands and feet. He started swelling as well. He was in pain but didn't wanna admit it. His blood work came back positive except his inflammatory markers. Throughout recovery, his b cells did not return and they couldn't do second dose of rituximab. They still did not return. When he was first diagnosed, his inflammatory markers (what is medical term for that?) was over 1000, eventually it was down to 20. Now, it is 300. They upped prednisone to 15/20. They are thinking of putting him on methotrexate, which he does not like, due to the nausea. He is not doing well emotionally. For some reason, he thought he had this beat. It is a letdown and depressing. We are trying to be encouraging, but it is difficult, especially now that he is back in school.

    Two questions please (basically one):
    1. Is this an indicator that b cells will be returning?
    2. Is there connection between inflammatory markers and b cells?

    Thank you, and let's pray for all of us.

  4. #104
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    Quote Originally Posted by Aneinu View Post
    Well it's been a while.
    Lots of new threads since I last posted.
    Hope and pray that everyone is on the recovery road.

    My son is turning 21 this month. After his initial dose of rituximab he was able to lower his prednisone to 5mg per day. He was getting back to himself. He did rewrite sinus surgery several weeks back, but they think that was unrelated. He was looking better, as his weight and puffiness was going away. Yes, past tense. Two weeks ago, he started once again experiencing joint pain, hands and feet. He started swelling as well. He was in pain but didn't wanna admit it. His blood work came back positive except his inflammatory markers. Throughout recovery, his b cells did not return and they couldn't do second dose of rituximab. They still did not return. When he was first diagnosed, his inflammatory markers (what is medical term for that?) was over 1000, eventually it was down to 20. Now, it is 300. They upped prednisone to 15/20. They are thinking of putting him on methotrexate, which he does not like, due to the nausea. He is not doing well emotionally. For some reason, he thought he had this beat. It is a letdown and depressing. We are trying to be encouraging, but it is difficult, especially now that he is back in school.

    Two questions please (basically one):
    1. Is this an indicator that b cells will be returning?
    2. Is there connection between inflammatory markers and b cells?

    Thank you, and let's pray for all of us.
    Doctor said that there can be b cells that are lurking that do not show up in the blood report. Does anyone know what that might be?
    Thank you

    Sent from my SM-G920V using Tapatalk

  5. #105
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    Hi. Sorry that your son is suffering again.
    When was his last rtx ? Was he on other meds since then ?
    How much is his creatinine ? I dont remember if he has kidneys involvement ?
    What blood tests are not normal ?
    My wg dr. Said that b cells are not the indication for another rtx. Wg can be active with a result of zero. Same about C-anca and pr3. He sends me to rtx every 6 months, no matter what.
    My wg dr. Says that we need to look at all the picture. Apart from joints pains, does your son have other wg symptoms ? Nose bleedings ? Gums bleedings ? Ears issues ? Coughing ? Rash ? Fatigue ? Others ? Where is the swelling ?
    Sending prayers for your son and for you. I understand how tough the caretaker has 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.

  6. #106
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    Quote Originally Posted by Alysia View Post
    Hi. Sorry that your son is suffering again.
    When was his last rtx ? Was he on other meds since then ?
    How much is his creatinine ? I dont remember if he has kidneys involvement ?
    What blood tests are not normal ?
    My wg dr. Said that b cells are not the indication for another rtx. Wg can be active with a result of zero. Same about C-anca and pr3. He sends me to rtx every 6 months, no matter what.
    My wg dr. Says that we need to look at all the picture. Apart from joints pains, does your son have other wg symptoms ? Nose bleedings ? Gums bleedings ? Ears issues ? Coughing ? Rash ? Fatigue ? Others ? Where is the swelling ?
    Sending prayers for your son and for you. I understand how tough the caretaker has it.
    Thank you for your prayers and concern.
    May God be with us all.

    His last rtx was in October/November. They were waiting until b cells reappeared. Now, however, they will not wait and do again in probably two weeks. They did up his prednisone to 20; started at 80 and was down to 5 for several months. He is getting rashes at extremities and joints are heavy. The inflammatory marker which is over 300 now, I think is called pr3. As of now, no renal issues, thank God. He does feel stuff in his lungs, as he recognizes symptoms from last time. Doctor said to give the dose a few days and see what happens. I will abide, but with a short leash. If it persists, he should come back home (from nj to Cleveland) to get proper care.

    Thank you again

    Sent from my SM-G920V using Tapatalk

  7. #107
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    Oh, and they did say that there is a good chance that they will add methotrexate to his diet.

    Sent from my SM-G920V using Tapatalk

  8. #108
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    Then he was not on wg meds for too long. Dont count on b cells. They can be midleading.
    I am glad that he will soon get rtx. Adding mtx sounds more safe. It will be his maintenance med. Actually he was not on any, so the risk of relapse is higher.
    Pr3 is the derivative of C-anca and for me as well it is a sign for wg activity.
    Hang in there. It sounds like a good plan.
    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.

  9. #109
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    Quote Originally Posted by Alysia View Post
    Then he was not on wg meds for too long. Dont count on b cells. They can be midleading.
    I am glad that he will soon get rtx. Adding mtx sounds more safe. It will be his maintenance med. Actually he was not on any, so the risk of relapse is higher.
    Pr3 is the derivative of C-anca and for me as well it is a sign for wg activity.
    Hang in there. It sounds like a good plan.
    I put a call into doctors yesterday to try to understand how weg can be active even though there are no b cells recognizable thru blood tests (there's another test thru bone marrow) and if they are there, why wait two weeks for another dose of rtx. My son really does not want the methotrexate, for it is a three year process and it knocks you out once a week.

    I didn't hear back yet.

    He is feeling somewhat better due to the higher dose of prednisone. He does say that he feels it considerably in his joints.

    Thank you all and God bless.

    Sent from my SM-G920V using Tapatalk

  10. #110
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    Quote Originally Posted by Aneinu View Post
    Doctor said that there can be b cells that are lurking that do not show up in the blood report. Does anyone know what that might be?
    Thank you

    Sent from my SM-G920V using Tapatalk
    I heard that B cells can hide in lymph nodes. But I don't know more than that.
    Trust in the Lord with all your heart
    and lean not on your own understanding;
    in all your ways submit to him,
    and he will make your paths straight.
    Proverbs 3: 5-6

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