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Thread: Cyclophosphamide (Cytoxan)

  1. #11
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    Default Re: Cyclophosphamide (Cytoxan)

    Hello Everyone,

    I've had 3 infusions of cyotoxan and progress on my GPA isn't what my rheumy would like to see, so she is considering putting me on the oral version. I would love to hear more about strengths and weaknesses of this approach. My rheumy says I'll take regular doses every day and while it will hit the GPA harder and more consistently then my monthly infusions, it will have more intense side effects. Would love to hear about your experiences.

    More about me:
    - I'm currently on 15 mg of pred daily
    - My main symptom is inflamed sclera of my right eye. I go get runny noses from time to time
    - The pred and the cyotoxan do a good job of controlling the symptoms, but the eye is healing very slowly
    - My side effects from cyotoxan have been tiredness for 2-3 days, a bit of nausea, a slightly reduced immunity, nothing that has kept me from living my life.
    - Being treated by UCLA (University of California, Los Angeles) doctors. Great job by them.

    Thank you in advance. Y'all have a great day!
    "Ring a bell, that still can ring, forget your perfect offering, there is a crack in everything, that's how the light gets in" -Leonard Cohen

  2. #12
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    Default Re: Cyclophosphamide (Cytoxan)

    Quote Originally Posted by jrslim View Post
    Did anybody here get the nausea and vomitting or any other short term side effects for that matter? Don't want to miss work if I don't have to.
    When I had CTX infusions they would give me pills for the nausea, and a couple of pill to take home for the next time. Once they forgot to give pills home, and I was feelign quite nauseous for the next day.

    To my understanding they no loger give it at all in the pill form in my country. Hopefully you'll be able to swith soon to another med.

    BTW, one of the nurses suggested I'd flush the toilet twice after urinating after an infusions, as she said its quite possible that some of the CTX could vaporize into the air, which wouldn't be that great as I ahd young children at home. Haven't heard that elsewhere tough, but maybe its not a bad idea anyway.
    Diagnosed 08/2013, Relapse 07/2014, Relapse 5/2017 (although early signs of it from 12/2016)

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