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Thread: 20 year old son

  1. #111
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    Everyone talks about B cells on the Forum and I'm not sure where they show up in my blood report. Can you illuminate?
    Thanks!

  2. #112
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    Quote Originally Posted by Gab122 View Post
    I heard that B cells can hide in lymph nodes. But I don't know more than that.
    Also in tissues.
    There seems to be a debate about it.

    Sent from my SM-G920V using Tapatalk

  3. #113
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    I had an extended conversation with the doctor in regards to his recent labwork. [This is partly from the Dr.] His labs showed baseline renal function, no electrolyte abnormalities, and normal liver function. His white blood cells, hemoglobin and platelets were all normal. His inflammatory markers were also normal. We discussed his PR3, which was 1047 when he was diagnosed and had come down to 40 with treatment was now 340 and with the rash on his hands this was concerning for potential flare. His immunodeficiency panel still showed a lack of circulating B cells. We discussed that although there may be no B cells in his blood, there may be B cells in his tissues and vessels causing vasculitis but there is no way for the doctors to know this. This is a debated topic however. They started an increased dose of steroids these medications work fast, unlike other medications including rituximab. Different methods of disease remission and maintenance were discussed including rituximab for both vs rituximab for induction and azathioprine or methotrexate for remission. Both of these algorithms are being given in their facility as well as across the country for both adults and pediatrics. Some of this has to do with training, personal choice, medication side effects, and experience but currently there is no consensus and there are studies ongoing. We also discussed Cytoxan (cyclophosphamide) as an older treatment for vasculitis but more recent studies did not show it was better than rituximab and it has higher side effects and cancer risks. I had been in email conversation with Dr Langford and the doctor let me know that she had rotated with her and other providers in the Cleveland Clinic Vasculitis institute. We discussed that depending on his upcoming labs they will decide whether to continue or increase steroids, add methotrexate or azathioprine, or redose rituximab.

  4. #114
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    Quote Originally Posted by Aneinu View Post
    . We discussed his PR3, which was 1047 when he was diagnosed and had come down to 40 with treatment was now 340 and with the rash on his hands this was concerning for potential flare. His immunodeficiency panel still showed a lack of circulating B cells. We discussed that although there may be no B cells in his blood, there may be B cells in his tissues and vessels causing vasculitis but there is no way for the doctors to know this.
    Was your son's ANCA TO PR3 1047 ??? My ANCA to pr3 was 1178! I was wondering if there were others out there with high ANCA over 1000. Did they explain why it was so high? I've not rec'd any answer.

    I'm sorry to hear his symptoms are flaring but glad pred is helping! They put me on 60/day pred for 6 weeks. Just dropped to 40 a week ago. What dosage is he on.

    God bless you too! Tough road for a mom!
    -Gab
    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

  5. #115
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    Quote Originally Posted by Gab122 View Post
    Was your son's ANCA TO PR3 1047 ??? My ANCA to pr3 was 1178! I was wondering if there were others out there with high ANCA over 1000. Did they explain why it was so high? I've not rec'd any answer.

    I'm sorry to hear his symptoms are flaring but glad pred is helping! They put me on 60/day pred for 6 weeks. Just dropped to 40 a week ago. What dosage is he on.

    God bless you too! Tough road for a mom!
    -Gab
    Thank you.

    I believe it was high in the beginning due to the unchecked disease. He had a lot of blood in his lungs.

    His pred dosage after rtx was 80, eventually lowered to 5, and now back to 20.

    I'm his dad, btw.

    It is tough to watch him in pain, but we pray that the doctors are the correct messengers for him and for all.

    Sent from my SM-G920V using Tapatalk

  6. #116
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    Sorry aneinu!! My mistake!
    It's a rough road for dads too!!
    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

  7. #117
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    Hi, my name is Elizabeth. I'm sorry to hear about your son. My daughter is 10 and going through what we believe to possibly be GPA. She has been hospitalized twice in the last month for severe hives, rash and swelling. They diagnosed her at the time (3 wks ago) with having HSP. however, her nose was having bleeding and sore. She is having more blood and soreness and severe stuffiness. We are waiting to here back from Children's Hospital Seattle ENT as to when she will get in for a biopsy and scan. Can you please share with me what your son's symptoms were? I am praying for him and you as I already know what we will be in for if this is truly what she has.

  8. #118
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    Quote Originally Posted by Gab122 View Post
    Sorry aneinu!! My mistake!
    It's a rough road for dads too!!
    No problem at all.
    It is certainly more difficult for my wife.

    Sent from my SM-G920V using Tapatalk

  9. #119
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    Quote Originally Posted by grneyedgrl74 View Post
    Hi, my name is Elizabeth. I'm sorry to hear about your son. My daughter is 10 and going through what we believe to possibly be GPA. She has been hospitalized twice in the last month for severe hives, rash and swelling. They diagnosed her at the time (3 wks ago) with having HSP. however, her nose was having bleeding and sore. She is having more blood and soreness and severe stuffiness. We are waiting to here back from Children's Hospital Seattle ENT as to when she will get in for a biopsy and scan. Can you please share with me what your son's symptoms were? I am praying for him and you as I already know what we will be in for if this is truly what she has.
    Thank you.
    We pray for her as well.
    He came in with rashes, sore limbs and joints, swelling, nose and cold symptoms.
    We thank God for our pediatrician and the doctors at uh who after an initial doctor or two did not see the diagnosis, they caught on right away.

    I think by the first lung x Ray or cat scan, there was more than 60% filled with blood.

    Sent from my SM-G920V using Tapatalk

  10. #120
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    Hi Elizabeth,

    I don't know what HSP is but I know you must want answers because I know how desperately I did for myself. I'm really hoping your daughter has something less serious than Weg GPA.

    In addition to waiting for ENT to schedule a biopsy and scan... A quicker way to find out might be to do lab work for inflammation markers like sed rate, crp and rheumatoid factor. If those are elevated Dr would order ANCA labs which are a pretty common occurance with wegener's GPA patients. You could find out these results quickly within a week and start treatment if needed.

    If you already had her inflammation markers and/or ANCA tested you may want to find a rheumatology Dr instead of an ENT dr.

    You could contact the vasculitisfoundation.org for info on specialists in your area.

    Wishing the best for your daughter!
    Gabrielle
    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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