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Thread: Rituximab Question

  1. #1
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    Default Rituximab Question

    I am writing this after a super amazing visit with my NEW rheumatologist. I can't explain in words how happy I am with the changeover. She is a wonderful human being, our visit was two hours long and she's trained at the Mayo under Dr. Specks. She is constantly communicating with them and also working on starting a vasculitis clinic in Edmonton. COOOL!!!

    She told me that she is concerned about me (the first time I've heard that from my specialist) and is changing my treatment protocol. I will be getting rituximab in the not too distant future and after reading up on it a little, I have one concern. The JC virus. Have any of you that have had rituximab get tested for JCV antibodies? I know the odds are very very low, but I seem to be playing the odds game on the wrong end of the spectrum, so I want to go in taking all possible precautions.

    Also, once your B-cells get eradicated and your new baby B's come back within the next year does that mean that you're now susceptible to all the things that you had previously built immunity to, essentially making you a toddler from an immune perspective?

    I'm getting it done no matter what, I just want to go in informed and as prepared as possible. Thanks in advance for what I know will be a wealth of information.

  2. #2
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    I can't really answer anything regarding RTX, but I'm so glad to hear that you got a better doctor
    ~ Bob

  3. #3
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    Great to hear that you have found a 'Good-un' Marta. I have found that feeling better is not always down to drugs but also coming under the spotlight of a good doctor can give you a positive buzz.
    I,like you , was due to start a Rituximab session, but everything has been put on hold these last 6 weeks as results are evaluated. I wish you all the very best and will be looking out for your postings!

  4. #4
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    Thankgs Bob and Geoff, You have no idea how buzzed I am over the new doc. I came home after the visit and my mom and dad said they could see the releif on my face as soon as I walked through the door. Now to get this Weggie Bitch Kitty under control, and life will be good.

  5. #5
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    That is awesome to hear Marta. I am so glad you got a good doc now.

  6. #6
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    Great news Marta

  7. #7
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    I am so happy to hear this, and am looking forward to hearing how you do on RTX!

  8. #8
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    Marta, could you explain to us why you are going on rtx? Are you not responding to the ctx? What is her reason for changing courses? Are you feeling OK?

  9. #9
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    Oh, and I wanted to ask, what is the JC virus?

  10. #10
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    I don't know a whole lot, but I read a little about the JCV and RTX before starting my own treatment. From what I read, the JC Virus can cause PML (Progressive Multifocal Leukoencephalopathy) which effects the white matter of the brain? My limited understanding is that this effects your memory.
    Nicole

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