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Thread: Rituxan Question

  1. #31
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    The Rhuemys usally don't start you out with cytoxan. When I was diagnosed in 2008, the called it limited Wegs because it was in my sinuses only. At that time they just increased my prednisone to 60mg and I staying on my cyclosporine(immunosuppression kidney transplant). I knew I need more immunosuppression meds...it was too late and I developed a lung nodule 6 months later after being diagnosed. At that time I did not have a WG specialist.

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    Just wanted to update, and share the good news. Genentech just called me, and they have approved me to recieve the Rituxan for 1 year at no cost! Take THAT insurance company LOL

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    That's awesome. I hope it works for you misskay.

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    Hip, hip, HOORAY!!!!!

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    Docs office just called... first infusion of Rituxan is Feb 3rd. For anyone who's had it, what should I expect? Nausea? Continued hair loss? Any info would be great...
    Seeing the Pulmy tomorrow... and not a minute too soon. Am feeling pretty awful. Coughing up nasty stuff again, and my lungs actually hurt and feel 'heavy' if that makes any sense. Also bloody noses, more sinus congestion, fatigue, pain, blue fingers and toes, night sweats, horrible back (mid and lower) pain and mouth blisters. (Same as original symptoms) so pretty sure I'm flaring after 6 weeks with no chemo. Almost sure I'm getting or already have pnuemonia again :/
    Will update after I see Pulmy tomorrow.

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    Hey, you're starting rtx the day after me! Like any of our drugs the side effects are highly variable. Some people say they don't notice anything and just go back to work. For some of us the treatments are incredibly weakening. Basically I go in feeling lousy and leave in a wheelchair. I've done 2 rounds of 4 infusions each, and both times I was pretty flat for 6 weeks (counting from first infusion). By flat I mean not able to cook for myself or clean my house, can barely walk, etc... It's like getting a reverse blood transfusion. No other side effects--no nausea, definitely no hair loss (it's not chemo). This time I'm only doing 2 infusions so I'm hoping it won't be as hard.

    Dr Seo said some people react this way to the infusions and there's no predicting how it will go.

    I'm not sure if it's safe for you to wait another 8 days to start treatment. Your Wegs sounds highly active. I also question that it's pneumonia since all your other symptoms are Wegs. Rtx takes several weeks to start working. They might have to put you on high dose pred to get the lid on things until it kicks in. If I were you, I'd ask about starting rtx this Friday.

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    Sangye, the cavity pnuemonia was what first had me hospitalized (major lung involvement)... the holes are still in the lungs but had been shrinking with the Pred and Cytoxan. I'll see what the Pulmy thinks tomorrow when he does x-rays and breathing tests. He may very well stick my butt back in the hospital and see about starting the Rituxan immediately. The first open space at the infusion center is mine... Feb 3rd. They told me it will take 6 hours. Is this normal?

    Not happy to hear how bad your infusions were... hoping they don't affect me that way *crossing fingers* Rituxan isn't like chemo? So no continuing hair loss? Cool... it's been 6 weeks today since my last chemo and it's still falling out by the handfulls. Wondering how long that will last.

    We've upped the Pred from 7.5 to 15 since we stopped the Cytoxan... hoping we don't have to go any higher. Too darn hard to taper back down.

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    I know you don't want to go in the hospital but if that's the only way to get rtx sooner it's probably best. However, if you have pneumonia it's not safe to start rtx because it wipes out your ability to fight infection. Docs--even JHU docs-- have been fooled into thinking I had pneumonia when my lungs were actually hemorrhaging.

    Rtx works by selectively destroying B cells-- a type of white blood cell. It doesn't have a global toxic effect like ctx but it's as powerful an immunosuppressant.

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    Quote Originally Posted by misskay View Post
    Docs office just called... first infusion of Rituxan is Feb 3rd. For anyone who's had it, what should I expect? Nausea? Continued hair loss? Any info would be great...
    Seeing the Pulmy tomorrow... and not a minute too soon. Am feeling pretty awful. Coughing up nasty stuff again, and my lungs actually hurt and feel 'heavy' if that makes any sense. Also bloody noses, more sinus congestion, fatigue, pain, blue fingers and toes, night sweats, horrible back (mid and lower) pain and mouth blisters. (Same as original symptoms) so pretty sure I'm flaring after 6 weeks with no chemo. Almost sure I'm getting or already have pnuemonia again :/
    Will update after I see Pulmy tomorrow.
    I don't remember any reaction to rituxan IV but I was pretty sick at time with other symptoms of Wegener's so doubt i would have noticed much. Hopefully you will notice some improvement and reduction in your problem symptoms and not much else. Good luck and let us know how it goes for you.

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