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

  1. #51
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    Default Re: Rituxin - C19 and C20 and length of B cell suppresion

    It would be easy if everything about this disease was in black and white, but its not unfortunately, I have been medication free for 10 months, luckily for me I have had monthly tests, and noticed that my PR3 was on the rise, went back on aza and have brought the numbers back down a bit, but still a way to go before the level is back to where it was, but I tried!! I hope you get back to where you were before soon, and keep up the info on this thread, as it is very informative.

    Best of luck.
    Regards Woz...

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  3. #52
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    Default Re: Rituxin - C19 and C20 and length of B cell suppresion

    Thanks Woz. I thought it was odd that when my PR 3 went up the second time the ANCA was negative - did that happen to you or was your ANCA positive also? Have you ever had to use Rituxin?

  4. #53
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    Default Re: Rituxin - C19 and C20 and length of B cell suppresion

    I have always had a positive ANCA, and my PR3 reading was 4, anything under 2 was negative, the scale in Australia is a little different that everywhere else, and I cant go on Rituxin untill I flare, or pay a lot for it!!!!

  5. #54
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    Default Re: Rituxin - C19 and C20 and length of B cell suppresion

    I have read where folks say the manufacturer has some sort of program to help folks with payment of the Rituxin

    Well I certainly hope you don’t flare! At one point my insurance wanted me to switch from Rituxin to Cytoxan but the Hospital I was getting the Rituxin infusion and my RA said nope and they have been paying for it thank goodness.

    If the ANCA is positive my understanding is that the disease could well be causing damage? Isn’t that reason enough for them to cover the cost. I read what Rituxin costs to make and the markup to the people who need the med and it is ridiculous. Like a few hundred to manufacture with the end cost to the consumer over ten thousand - this was in the US I believe.

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  7. #55
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    Default Re: Rituxin - C19 and C20 and length of B cell suppresion

    In Australia, if you are diagnosed with wegs, they treat you with Rituxin for most cases, this practice has been around for a year or so , i think it costs around $30 a treatment, and this is available to anyone, so my rheumy informed me, but for someone who has it already, they have to have a flare to be eligible to receive Rituxin at this price, I was close to being eligible as my Pr3 jumped to 51, from 4, but my inflammation markers were normal, and if there is no inflammation, no flare (so I'm to believe). My ruemy retired in December, she was just fantastic, and without her help, I wouldn't have the health I have now, hopefully my new rheumy can keep me on the right track.

    Thanks for sharing and caring, keep fighting and most of all keep writing!

    Regards Woz...

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  9. #56
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    Default Re: Rituxin - C19 and C20 and length of B cell suppresion

    Quote Originally Posted by Middlesista View Post
    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?
    @Middlesista

    I had my 19th rtx infusion today. We moved it up a few weeks (usually do it in late October) because I had a small flare last month (clobbered it with a week each of 20,15,10,5 mg) pred blast.

    Prior to that, Dr VF ordered a B-cell test to see where I was. My c19 was 0.1 and 2 is the bottom of the normal range. The test was taken about 10 months after last year's rtx. Ratio of c19 to c20 was 0. She was pleased. I continue to do pretty well. Hope things are going ok for you.
    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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  11. #57
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    Default Re: Rituxin - C19 and C20 and length of B cell suppresion

    Sorry you had to go through this tough time, sister. Thank God you are doing better.

    When my pr3 is up, I know it means that wg is active. It can be up even when C-anca is negative. And I had a flare with only pr3 positive and C-anca negstive.

    We need to look at the symptoms and not only at the numbers.

    I wonder about the negative effects of rtx on the lungs. I had a disturbing dry coughing for more then a year which disapeared about 1-2 months after my last rtx. My last rtx was only 1000mg for the first time. Since 2013 it was 2000mg every 6 months exactly.

    So maybe less rtx is better for the lungs ?

    On the other side, it seems that 1000mg is not enough to hold the wg for me, my next rtx should be at the end of October and my joints are killing me for more then a month now.
    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.

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