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Thread: In the hospital again!!!

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    Default In the hospital again!!!

    I went into remission in early November 2015, did not have any maintenance. May of this year(6 month remission)I had a flare, same as first time felt like arthritis problems. My doctor put me on methotrexate (16 Mg's once a week). So on Thursday morning I woke up to cranberry juice urine. I'll be getting a kidney biopsy tomorrow (4 of July ����) After I get out of the hospital they want to start infusions, not sure if I'm spelling this right Rituxin. Has anyone done this? I need to know if I'm doing the right thing, I'm scared! Opinions please!!!��



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    RTX is often first choice for treating any serious flare of Wegs but is also often used for maintenance treatment too. It is expensive but covered by insurance since it is now an approved treatment for GPA. It is generally regarded as having LESS side side effects than CTX which was only option a few years ago but many of us owe our lives to having CTX as it acts quicker and is very effective in most cases. Some times you can have both, I did.

    Sorry you are having a big flare but it sounds like they have a treatment plan and hope it works quick.
    more info on RTX here:
    Rituxan (Rituximab) for RA, NHL, CLL, GPA and MPA

    RITUXANŽ (rituximab) is indicated for the treatment of:

    • Low-grade or follicular CD20-positive non-Hodgkin's lymphoma as a single-agent therapy in patients whose disease recurred or did not respond to initial treatment
    • Follicular CD20-positive non-Hodgkin's lymphoma as an initial treatment with chemotherapy, and in patients whose initial treatment was successful, as a single-agent follow-up therapy
    • Low-grade or follicular CD20-positive non-Hodgkin's lymphoma as a single-agent follow-up therapy for patients who responded to initial treatment with CVP chemotherapy
    • CD20-positive diffuse large B-cell non-Hodgkin's lymphoma as an initial treatment in combination with CHOP chemotherapy
    • CD20-positive chronic lymphocytic leukemia in combination with FC chemotherapy as an initial treatment or as a treatment after disease has recurred
    • Rheumatoid arthritis with another prescription medicine called methotrexate, to reduce the signs and symptoms of moderate to severe active RA in adults, after treatment with at least one other medicine called tumor necrosis factor (TNF) antagonist has been used and did not work well enough
    • Granulomatosis with Polyangiitis (GPA) (Wegener's Granulomatosis) and Microscopic Polyangiitis (MPA) with glucocorticoids

    People with serious infections should not receive RITUXAN. It is not known if RITUXAN is safe or effective in children.
    Last edited by drz; 07-09-2016 at 07:56 PM.
    Knowledge is power! Wisdom is using it to make good decisions!

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    Thank you drz! What would you choose?

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    Hi Dorothea.
    When I was first diagnosed, a little over 20 years ago, my urine was the same colour. My kidneys had failed and I was put on dialysis. If this is the same for you don't panic. If dialysis is started promptly your kidnays have a good chance of being "saved" and in my case I only needed dialysis for about a month.
    The long term problem will be once WG has decided the kidneys are one of the organs it wants to "attack", it will likely do this every time you have a relapse. Each relapse/flare will damage the kidneys further and eventually transplant or permanent dialysis will be required.
    I hope dialysis isn't needed, but as I mentioned, it's unlikely to be permanent at this stage. Good luck!
    Diagnosed April 1995

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    When my kidneys were failing from Wegs in 2010 I started with RTX IV. I had two infusions and then they switched to CTX because the RTX was not working fast enough and then to the oral CTX because was easier to adjust to avoid adverse reactions. I had a bad reaction to some treatment back then but it was hard to determine what caused it but probably the CTX IV. I also had lot of blood transfusions and plasma exchanges and was able to avoid dialysis and my kidneys eventually recovered after a couple years to near normal function. I also had serious lung problems at the time and require a couple weeks or so of intubation just to survive. I believe the Weg kidney expert my team consulted was Falk at NC. Specks was lung consultant at Mayo. Both are known Weg experts.

    My treatment was considered very aggressive and I recommend an all out response to the flare to try save your kidneys and prevent more serious damage to your body.
    Knowledge is power! Wisdom is using it to make good decisions!

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    Gosh love, that's a fairly decent cup of cranberry juice

    I'm so glad that your doctors are on to it.
    Best of wishes to you for your biopsy tomorrow and just know that you have gone into remission before, so you are sure to do it again.

    Keep you chin up, and most of all ............
    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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