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Thread: Rituxin - C19 and C20 and length of B cell suppresion

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    Default Rituxin - C19 and C20 and length of B cell suppresion

    i know that the Rituxin wipes out your B cells and the C19 and C20 are lab tests that measure if your B cells are returning - I believe they are antigens attached to B cells if I understand correctly.

    I completed my Rituxin Dec 18th and my CD19 and CD20 are 0 still at about 9 months out.

    Wondering what other folks have experienced?
    Last edited by Middlesista; 08-31-2016 at 01:16 AM.

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    I had my first round of 4 infusions in May 2014, and the peripheral B-cells (CD19, 20) showed up at 1% in February 2015. After one booster infusion in March 2015, B-cells were at 0 until late January 2016, and I had a second booster infusion in Feb 2016. The time period generally varies between 6 and 10 months across patients.

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    Thanks Max! That is interesting for sure. I read that folks sometimes have repeat doses in 4 to 6 months and I would think that is because their B cells are back - I would not think that a doc would repeat the dose if the B cells were still surpressed? I also wonder if you can have GPA sx if your B cells are 0? So much more to understand about this. Like all of us I want less meds in my system but I do not want to have GPA take over.

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    Like all of us I want less meds in my system but I do not want to have GPA take over.
    What kinds of meds are most pure-GPA people on? MTX/RTX and pred? Anything else? I guess I've never asked that question before.
    Wegener's (​GPA )- dx Apr10, Granulomatous Hypophysitis - dx Apr10, Diaphragmatic Paralysis - dx Feb16, Bradycardia - dx Dec16. (my story)
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    My daily wegs meds are bactrim 3x weekly and 5 mg pred daily. I'm jumping through the insurance hoops for a course of rtx now.
    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

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    My daily wegs meds are bactrim 3x weekly and 5 mg pred daily.
    I'm guessing that is fairly representative for what most people do. I'm on a few more than that. I'm getting so tired of managing and taking meds.... Its getting very annoying, but it has to be a lifelong vocation now.
    Last edited by vdub; 08-31-2016 at 12:39 PM.
    Wegener's (​GPA )- dx Apr10, Granulomatous Hypophysitis - dx Apr10, Diaphragmatic Paralysis - dx Feb16, Bradycardia - dx Dec16. (my story)
    Forum Member Map -- world map for you to put a stickpin of where you are located....

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    Quote Originally Posted by Middlesista View Post
    Thanks Max! That is interesting for sure. I read that folks sometimes have repeat doses in 4 to 6 months and I would think that is because their B cells are back - I would not think that a doc would repeat the dose if the B cells were still surpressed? I also wonder if you can have GPA sx if your B cells are 0? So much more to understand about this. Like all of us I want less meds in my system but I do not want to have GPA take over.
    As Dr Spiera reminds me every time I see him, maintenance medication with RTX is an art, not yet a science. There have been studies showing its effectiveness under a once-every-6 month regimen. In some cases (esp. with patients who have had multiple relapses, yet do not take care of themselves, skip appointments etc.) he prefers to follow the 6-month regimen. In my case he'd rather follow a less-is-more strategy. He even suggested giving me a half-dose next time and after that just careful watching.

    I believe that you are correct that in the absence of B-cells the disease is dormant; the ANCA antibodies are produced from B-cells so assuming they're all gone there can't be any renewed disease activity. I don't understand all the details though, esp. whether all the B-cells are really gone, or just enough remain that cannot be measured.

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    Vdub - exactly for GPA now MTX and prednisone. First round of RTX completed in Dec and I am so hoping (like many/all) that I do not need this heavy hitter again.

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    Quote Originally Posted by Pete View Post
    My daily wegs meds are bactrim 3x weekly and 5 mg pred daily. I'm jumping through the insurance hoops for a course of rtx now.
    Pete - do they use RTX for maintanance for you?

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    Quote Originally Posted by MaxD View Post
    As Dr Spiera reminds me every time I see him, maintenance medication with RTX is an art, not yet a science. There have been studies showing its effectiveness under a once-every-6 month regimen. In some cases (esp. with patients who have had multiple relapses, yet do not take care of themselves, skip appointments etc.) he prefers to follow the 6-month regimen. In my case he'd rather follow a less-is-more strategy. He even suggested giving me a half-dose next time and after that just careful watching.

    I believe that you are correct that in the absence of B-cells the disease is dormant; the ANCA antibodies are produced from B-cells so assuming they're all gone there can't be any renewed disease activity. I don't understand all the details though, esp. whether all the B-cells are really gone, or just enough remain that cannot be measured.
    thanks again Max - I am all about less is best if able. Is it possible to have B cells present but since there is no antigen/ antibiotic reaction happening the CD19 and 20 are 0 since they measure the antigen on the B cell and not the B cell in ofitself if I am understanding correctly ?

    I think my slowly elevating CRP is more related to the supra suppression of my inflammatory markers by the high doses of steroids I was on and with the decrease in steroids my CRP began to rise. I feel I have "normally" elevated inflammatory markers since they have been elevated for decades with no sign of disease. In fact the second opinion specialist I saw at MGH mentioned that inflammatory markers might not be the best indicator for me and an ANCA and sx would be more optimal and I had this conversation with my RA. So we r going to go down on Prednisone and up another 2.5 mg of MTX for now and will see if any changes.

    i am a bit concerned about what might happen when B cells start to repopulate and it makes me think that when my prednisone was increased earlier they should not have been since no Bcells were present so my sx were not related to a flare but rather residual issues with my vision if the no antigen = no B cells is accurate Seems there has to be another method to measure B cells - I do not know, the more I read the more questions I have and the more I realize how little I understand

    just found this: A contrasting situation exists for patients receiving rituximab, ofatumumab, and other anti-CD20 monoclonal antibodies that are used to treat certain cancers, autoimmune diseases, or for B-cell depletion to prevent humoral rejection in positive crossmatch renal transplantation. These agents block available CD20-binding sites and, therefore, the antibody used for this flow cytometric assay cannot recognize the CD20 molecule on B cells. The concomitant use of the CD19 marker provides information on the extent of B-cell depletion when using this particular treatment strategy.
    Last edited by Middlesista; 08-31-2016 at 11:20 PM.

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