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

  1. #11
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    Quote Originally Posted by Middlesista View Post
    Pete - do they use RTX for maintanance for you?
    Yes. Jumping thru the insurance hoops now. Last August, I got 4x1 gram.
    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

  2. #12
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    Quote Originally Posted by Pete View Post
    Yes. Jumping thru the insurance hoops now. Last August, I got 4x1 gram.
    Does your doc check your B Cells prior?

    Insurance is such a huge player -

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    I just realized something. If B cells are continually killed off with ritux when they start to return, are we in a constant state of immunesuppression? I kind of thought the immunosuppression was going to be temporary? No?

    I do know MGH is doing a trial where they increase the ritux infusion rate and decrease the prednisone. (I couldn't participate because the ER had already started me on a pred taper (50mg-10mg in ten days) immediately back-to-back with MGH starting me on 60 pred. BUT if you get into the trial all meds are free. Something to try possibly if ins doesn't want to cover ritux. Maybe you could do it long distance Pete?

    Maxd and middlesista - I read both that B cells come back at 4 months and I read 6 months. ??? I guess it's not exact. MGH informed me that I'm to have my 3rd ritux infusion in mid Dec. (3.5 mos after 2nd)

    Also I was wondering... (Because I read and heard that B cells have memory) that if you wipe them out long enough they may forget all together about attacking (via GPA.)

    But that makes me wonder, will they forget how to fight all the colds and vaccines I previously had? I had chicken pox as a kid (and shingles as an adult) will my body forget it's immune to chicken pox?

    Max d, I was told that the reason there are multiple rounds of ritux (1 week or 2 weeks apart) is because there are B cells that "hide" in the lymph nodes the first go-round and so the next infusion gets them.

    Vdub - As for GPA meds I'm on 60 pred and had 2 ritux infusions (but I don't know dosage). Plus I'm on Prilosec, bactrim, Ambien, calcium, and Vit D (because I'm on prednisone and ritux).
    Because of my sinus drainage (allergies or GPA?) I'm on Zyrtec, Astelin and Nasonex. Because of my lungs (asthma or GPA?) I'm on Flovent and albuterol as needed.

    I also take a multi vitamin and probiotic.

    Great thread!!
    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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    Very interesting thread, the last two years now I have taken one large dosage RTX, every 6mo, 7 mgs preds daily, bacterium MWF for maintenance. I get monthly labs in which fluctuate on B cell count from month to month. It is really hard to really know where you are at when taking preds everyday. Two years ago I also took Cellcept while doing the RTX every 6 mo. The doctor and I agreed to test taking me off of the Cellcept and just using RTX. She said at that time that a study in Europe had suggested that, too much tx could prove to be doing the opposite and could be harmful. So in other words less is sometimes more.

    I am trying to get a more local Rheumy to oversee my RTX and before they would do it they tested my IgG, it was to low for them to give me the tx. This was really confusing to me because, it would be lower because of being on preds for so long. I have been trying to understand all this B cell stuff for 6 yrs. tomorrow and still don't know what's going on. I do know that I feel a lot better than I did 6yrs ago!
    Jana


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    It does not matter how slowly you go, as long as you do not stop!


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    Quote Originally Posted by vdub View Post
    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.
    150mg Aszan (Azathioprine/Imuran)(2x75mg daily)
    (2) 1000mg RTX every 6 months (2 weeks apart)
    MikeG-2012

    "You never know how strong you are until being strong is the only choice you have"


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    Quote Originally Posted by Gab122 View Post
    I just realized something. If B cells are continually killed off with ritux when they start to return, are we in a constant state of immunesuppression? I kind of thought the immunosuppression was going to be temporary? No?
    Hey Gab, I hate to tell you, you'll probably be on them, in one form or another, forever. I was told that I can count on being immune suppressed for the rest of my life because of our wonderful/awful disease.

    <sigh>
    MikeG-2012

    "You never know how strong you are until being strong is the only choice you have"


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    Thx for answering Mike. Tho I wish your answer was different. Sigh.
    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
    ...I wish your answer was different. Sigh.
    Me too, me too. <sigh>
    MikeG-2012

    "You never know how strong you are until being strong is the only choice you have"


  9. #19
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    Gab: My doctors monitor my immunoglobulin levels (IgG, IgA, IgM) every three months - so far my levels have been around the low side of normal so they are not concerned. But I'm not currently on prednisone or any other medications while in remission (other than the RTX infusion last Feb). My docs have told me to live a normal life, and I haven't thought twice (but did ask at first) about going to the movies, traveling to Asia and Europe, etc. I'm not sure if I'll be on medication after completing two years in remission next January.

    Losing B-cells doesn't destroy ones immunity - T-cells (which are not affected by RTX but are by chemotherapeutic drugs) continue the job of fighting viruses etc. Regarding your earlier message, I think that by killing off a few generations of B-cells over two years with RTX, the hope is that the future generations of B-cells may not automatically produce ANCA antibodies. Of course, this is speculative and might vary from person to person. In the meantime, as long as docs are monitoring me, I wouldn't be overly concerned about the immunosuppression effects of RTX alone.

  10. #20
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    Quote Originally Posted by MaxD View Post
    Gab: My doctors monitor my immunoglobulin levels (IgG, IgA, IgM) every three months - so far my levels have been around the low side of normal so they are not concerned. But I'm not currently on prednisone or any other medications while in remission (other than the RTX infusion last Feb). My docs have told me to live a normal life, and I haven't thought twice (but did ask at first) about going to the movies, traveling to Asia and Europe, etc. I'm not sure if I'll be on medication after completing two years in remission next January.

    Losing B-cells doesn't destroy ones immunity - T-cells (which are not affected by RTX but are by chemotherapeutic drugs) continue the job of fighting viruses etc. Regarding your earlier message, I think that by killing off a few generations of B-cells over two years with RTX, the hope is that the future generations of B-cells may not automatically produce ANCA antibodies. Of course, this is speculative and might vary from person to person. In the meantime, as long as docs are monitoring me, I wouldn't be overly concerned about the immunosuppression effects of RTX alone.
    Thats great news Max!

    A couple follow up questions:
    So if I'm on 60 mg prednisone daily and just had 2 infusions of ritux in August, does that make me currently immunesuppressed (A little? A lot?).
    I guess I didn't think the prednisone was part of immune suppression. I thought it was an anti-inflammatory drug (same thing?)

    Please educate me if I'm wrong. I thought the Rituxan stopped the disease activity from continuing and the prednisone cleaned up the mess from the previous disease activity (like shrinking granulomas) ?

    So I must still have my T cells? Not fully immune suppressed? Do the T cells house the info of my previous vaccines? Or was that on B cells?

    How does the immunoglobulin levels play into all this? Do they ever test your ANCA levels too (I know that's a debated activity indicator)

    Lastly, being in remission, how do you feel? Do you feel like you did before GPA? If you've mentioned how you feel in other posts forgive me for forgetting... I'm the new kid on the block and mix up everyone's stories somewhat.


    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

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