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

  1. #41
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    Gab: The numbers likely refer to the volume and page numbers and year of publication in the two journals.

    Don't worry about all the CD markers - the only ones relevant to us are CD19 and 20.

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    Quote Originally Posted by Middlesista View Post
    Some great thoughts and questions Gab! I also thought the B cell suppresion was of a shorter duration but it seems to vary and I never knew about the shy B cells hiding in the lymph nodes - sneaky devils. I am also interested to learn about the B cell memory and how they play a role?
    Middlesista, I just realized I never responded to your question about B cell memory. Unfortunately I don't know more than that I heard they have a memory. If I find out more I'll message you. In the meantime maybe someone else on the forum has an answer.
    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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    Quote Originally Posted by Gab122 View Post
    Middlesista, I just realized I never responded to your question about B cell memory. Unfortunately I don't know more than that I heard they have a memory. If I find out more I'll message you. In the meantime maybe someone else on the forum has an answer.
    Than you Gab - I have been poking around for awhile but could not find anything concrete or at a level I could understand.

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

    Just revisiting this thread as I found myself requiring another go at Rituxin. I had initial doses in Winter of 2015 when I was diagnosed and was put on MTX for maintenance along with varying doses of Prednisone few months later. Got down to 3 mg of Prednisone. New lung lesion turned up and PR3 came back positive after being negative for a few years. Found we can not go by my inflammatory markers as they are chronically elevated. First time I had Rituxin I was pretty sick so felt lousy anyway this time I was not as ill but am finding I am pretty tired after this 4th infusion and have a wicked dry mouth. The increased prednisone is making blood sugars crazy but at least I am functioning and working - need that medical insurance. RA is talking about using RTX as maintenance which I resisted before but I am reading more and more about this - wanting the B cells to develop amnesia sounds like a good thing.

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

    Just had long talk with my Dr. about that today. He says they don't use those numbers to see where you are at. He goes by ANCA, CRP and sed rate. Just had mine done and all are fine. Been 7 months since last Rituxin infusion. I have decided to go with out until I have bad labs, or start a flare. He has several patients that are doing that. One has been 38 years. Diagnosed at 19. Anyway he did do the labs on my B cells but results are not back yet. Will try and let you know what they show when they come back. He said CD20 is what wiped out.

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

    Sorry just read this after posting. I was diagnose in 2014 after lungs and kidneys were involved. Did the whole prednisone, plasma exchange and 4 weeks of Rituxin infusion 1 a week. I got off the prednisone in about 6 months of taper. It was a horrible 6 months. I have been using just Rituxin for maintenance since with no side effects or trouble with infusions. I hate pills so wouldn't do it any other way. Prednisone causes more side effects than the RTX. Good luck!!!

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

    Quote Originally Posted by loisann11 View Post
    Sorry just read this after posting. I was diagnose in 2014 after lungs and kidneys were involved. Did the whole prednisone, plasma exchange and 4 weeks of Rituxin infusion 1 a week. I got off the prednisone in about 6 months of taper. It was a horrible 6 months. I have been using just Rituxin for maintenance since with no side effects or trouble with infusions. I hate pills so wouldn't do it any other way. Prednisone causes more side effects than the RTX. Good luck!!!
    thanks Loisann - will be having C19/20 done next month.

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

    As I mentioned earlier in this thread I was of the “less is best” mind set and did not want the every 6 month infusion so we tried MTX however last year ended up with new lung lesion and had to go through induction therapy again. However in my case the “ less is best” mentality left me with more damage done - lesson learned. I finished the second Rituxin series in July and ended up back in Hospital 2 weeks later for an atypical lung issue. In fact one of the tentative diagnosises was pneumonitis due to the Rituxn! They did a bronch and felt that it was doubtful that this was the case based on the findings. Thankfully recovered from that and they felt it would be safe to go ahead with my maintenance dose (time will tells how that works out since I just had that Rituxin dose today)

    My CD20/CD19 were still showing up in my blood work 3 months after that second infusion series although in very low numbers, repeat blood work done this month demonstrated these levels were 0. Because of my earlier experience I agreed to go ahead with the scheduled infusion. Lots of pros and cons of the every 6 month infusion vs the watch labs and sx and do not use Rituxin for maintenance. Confusing and frustrating and I know we are all different in our journey with GPA. I guess what I learned was as soon as my PR3 became positive and that lung lesion showed up I should have pursued Rituxan and not been reluctant. Foolish of me -
    Last edited by Middlesista; 01-23-2019 at 11:56 AM.

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

    @Middlesista

    Unfortunately, experience can be a tough teacher. Hope you continue to improve.
    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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    Default Re: Rituxin - C19 and C20 and length of B cell suppresion

    Thanks Pete- hope all is well with you and yours.

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