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Thread: Rituxan and low antibodies

  1. #1
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    Default Rituxan and low antibodies

    Hello all,
    I have been on Rituxan for several years now. A few months ago I developed pneumonia and was hospitalized several times for it to get IV antibiotics. Then I was put on inhaled Tobramycin. I take the Tobramycin twice a day for 28 days. Then nothing for another 28 days. It seems to be working well as I have not had pneumonia again. I am on my third cycle of Tobramycin.

    Because of the repeated pneumonias my Rituxan infusions were stopped. I had been getting them every 4 months. I am happy to report that I have had NO Rituxan for 8 months now and I am doing fine. My doc says that he is seeing people able to quit the Rituxan after a couple years. It is looking like I am one of those people. So far.

    I had an antibody test a few days ago and it shows that I am very low on antibodies. Because of this he says I will likely stay on Tobramycin until my antibodies come up - or, give me an infusion of IVIG.

    Has anyone here been in a similar situation? I'm wondering how the decision is made to do IVIG. So far I am tolerating the Tobramycin very well. I wonder if I will be kept on that instead of getting IVIG. Any ideas?

    Thanks,
    Kirk

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    Default Re: Rituxan and low antibodies

    Hi Kirk.
    I am glad you have found good med. I dont know anything about Tobramycin. But I recall my wg dr. Saying that Ivig in itself can be wg med. I also know a weggie (the other one who like you and I also has MC) who is treated by Ivig every few weeks without being on other wg meds. (She had a reaction to rtx).
    Please update us how are you doing. Sending you prayers.
    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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    Default Re: Rituxan and low antibodies

    Thanks Alysia. Prayers appreciated.

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    Default Re: Rituxan and low antibodies

    Wow Kirk, that doesn't sound the best, with so much pneumonia, but I'm glad it is much better now.

    I've never heard of Tobramycin either, but being a "mycin" it is a strong antibiotic. Strange that it is keeping everything good.

    I understand that IVIG works well, so maybe RTX can just be kept as a big hitter if you every need it again - fingers crossed that you don't
    Keep Smiling
    Michelle


    Live your life in a way that you wouldn't be ashamed to sell the family parrot to the town gossip - WILL ROGERS

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