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Thread: Newbie here

  1. #1
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    Default Newbie here

    Hi all,
    I've had lupus since 1979...been treated with plaquenil, steriods, plasmaphersis, imuran, methotrexate and cellcept. The cellcept has not been effective, so now I'm gong to start some IV cytoxan infusions for 6 months.
    I am a retired teacher, a mom of 3 who loves to read, do crafts and travel. We've been to Mexico many times, France, Italy, England, Spain, and Guatemala. (our son is adopted from there) I refuse to let lupus rule my life, so when I'm feeling good, we are out and about! We live in NJ 5 minutes from the ocean. I also love to swim. Our youngest is a freshman in college now, so we are enjoying some alone time while he is at school.
    I am wondering if anyone here has had cytoxan infusions, how it was tolerated, and how the results were.
    Judy

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    Hi Judy, I am new here as well. What I am treated with for now is Plaquenil because I can no longer tolerate the steriods and I struggle with so many of the medications! I have such horrible chronic pain, from joint pain to the 5 herniated discs in my back.
    My muscles spasm terribly which is fairly new.

    I TRY so hard to join in on life, but the heat kills me as does the cold Living in NH is so challenging for me. I am disgusted these days with my increase in pain.........

    Thanks for introducing yourself. And thanks for sharing your story. I think it helps to know others that feel the way that we do.

    Thank Goodness we don't have to feel so alone.
    Nice to meet you!!
    Ella

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    tgal is offline Super Moderator Super ModeratorEmperor of the Solar System
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    Let me officially welcome both of you to WHL! Our WHL family is a lot like the difference in your stories. We have many people with symptoms that range from mild to more severe. This place is like a refuge for many of us. It is the place we come when we need someone to understand what we are going through. Sometimes it is hard to explain to someone that doesn't have AI Diseases what it is like to live with them. That is why we are here.

    We are really glad that both of you found us. Please make yourself at home. Feel free to look through the old threads or start new ones on your own. Jump in at any time because everyone has something to offer. I look forward to getting to know you and, once again, welcome to the family!
    Mari

    Success is not final, failure is not fatal: it is the courage to continue that counts.

    ~Winston Churchill~







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    Hello Judy,
    Welcome to the WHL and it's lovely to hear how you put the Disease behind you and get on with life but for alot of us it's a very difficult factor to deal with but i do admire you determination.
    I can't help you refering the cytoxan infusions but in due course someone with answer your question.

    Terri xxx

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