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Thread: Did Rituxan NOT Work for You?

  1. #1
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    Default Did Rituxan NOT Work for You?

    I was diagnosed with Wegs in March 2015, spent 6 months on Cytoxan & prednisone, got sick & almost died in December from Cytoxan side effects, tried Imuran for 6 weeks in February this year but experienced horrid side effects (was taken off it), and finally started Rituxan infusions last month. I have my last infusion Friday (4th infusion). I didn't have any allergic reactions to Rituxan, but have been hit with exhaustion & flu-like symptoms for a few days after every infusion.

    My concern is: I don't feel as though Rituxan is working for me either. I've been experiencing daily fevers this entire year, and they are still here even with Rituxan. I still feel as though I'm extremely worn out every day, I still have the "night" sweats several times a day, still have extreme food aversion/nausea/vomiting all the time, chronic pain, muscle spasms, just a total flu-like feeling all the time. I had blood drawn yesterday, so hopefully I'll get my results by Friday so I can see how the Rituxan has affected me.

    I'm just curious if Rituxan failed to work for anyone here. If it doesn't work, we're down to just having Cellcept to try, as I can't take methotrexate because of Stage 4 kidney failure. I've heard Rituxan is THE miracle drug, so I'm praying it works, but just wondering if maybe it doesn't work for everyone. Thanks!

    Teri
    Teri from Texas
    Diagnosed w/WG March 2015
    "Lord my God, I called to you for help, and you healed me." - Psalm 30:2

  2. #2
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    I'm trying to remember my history with Rituxan but it goes back pretty far and I was extremely ill at the time. What I do remember is that it seemed to have zero benefit for me and I had to have more courses of it to finally see some results. I vaguely remember Dr Langford telling me my experience was not uncommon. I wish I had clearer memories of this to share but I thought my hazy version might be better than saying nothing. I think now Rituxan helps me. I know in the begginning I was very discouraged. I hope you get your upward direction soon.

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    I just finished 4 rituximab infusions for my flare. When I was first given the rituximab in 2013 it seemed to take several months to see the final result but it did work well for me. Praying you get better results as times passes

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    I was told that rituximab wouldn't take full effect until 4-6 weeks after last infusion. It took about three months until my labs were back to normal.
    Pete
    dx 1/11

    "Every day is a good day. Some are better than others." - unknown

    "Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD

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    My son had two doses of rituximab at university hospital rainbow in Cleveland a week after he was diagnosed. It, together with prednisone, has kept the b cells and the inflammation away for the past nine months. Just in the past week or two, his inflammatory markers has risen to 300 (down from 1000 when he was admitted initially, but up from 20, where he has been holding steady).

    Hope you feel better.

    Sent from my SM-G920V using Tapatalk

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    Teri - I hope and pray the retux works for you.
    Its working for me, tho I did feel tired and a bit under the weather after both of my infusions. Because my O2 level was low they did a follow up ct and after only 4 weeks of pred and 2 infusion my granulomas were smaller. Maybe the symptoms you are experiencing are not disease activity but rather fighting off infections since your immune system is suppressed.

    You are in my thoughts and prayers. . Please update us with your results when you get them.

    Your Weg/GPA sister
    Gab
    Trust in the Lord with all your heart
    and lean not on your own understanding;
    in all your ways submit to him,
    and he will make your paths straight.
    Proverbs 3: 5-6

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    Teri - I'm a NHRepub4God
    Trust in the Lord with all your heart
    and lean not on your own understanding;
    in all your ways submit to him,
    and he will make your paths straight.
    Proverbs 3: 5-6

  8. #8
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    Gab122 - that is wonderful! Glad to know there are other women that have similar values in here that also understand life with Wegs. May God bless you greatly! 🙏🏻

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    Hi Teri - Hang in there. It may be worthwhile. I was told Rituxan gains slowly and takes a few months to peak efficacy and then wanes. I did two infusions / two weeks apart and then again 6 months later. Rituxan did wipe out my b cells. But it's hard to say definitively if it did anything for wegeners or not. I didn't die. So, that's good and may be related to the Rituxan. Had my last infusion in Jan 28th of RTX and by April 28th I had another severe flare and had an infusion of Cytoxan that lasted 6 months. High dose prednisone was necessary despite having an Adverse Glucocorticoid Reaction initiated by pulse therapy of Solu Medrol (1 gram / day x 3 days).

    I was very sick at the time of RTX and survival was iffy. So I tend to believe the RTX helped but it made me feel sick for a good 4 months. Like the flu. Given that another flare occurred as the RTX was wearing off, I think it probably was holding back wegs symptoms.

    Once I regained movement of my leg, I walked most every day, which helped overall with the systemic flu like feeling and sickness. Light weights, stretching, meditation and strategic nutrition also helped. Hard to excercise when nausea and fatigue are bad but sometimes I can walk through that feeling. Sometimes I can't and end up in bed. Without zofran and kytril I couldn't manage the nausea, so those meds have allowed me to exercise. The systemic aspect of my disease and overall physical well being are closely related to exercise, nutrition, stress reduction, socializing and such...

    Best wishes,
    Tom
    Best wishes,
    Tom
    ----------------------------------
    2 years untreated. Dx w/ biopsy - 2000
    Tx Plan:

    NUTRITION
    RESTORATIVE SLEEP
    RAISE ANABOLISM
    REDUCE ALL INT / EXT STRESSORS

  10. #10
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    Thanks to all for replying with your Rituxan experiences. I have been extremely ill since finishing my 4 IV infusions of the drug. It has been miserable. I had several days of very swollen lymph nodes in my neck & underarms, that made it hard for me to breathe when laying down. I saw my rheumy on Wednesday & she gave me a z-pack of antibiotics & ordered some lab work. I've had fevers every day, too.

    This weekend I started having extreme sharp, stabbing pain in my upper left chest (underneath the collarbone), along with the fever still. By my symptoms alone, I believe it's pericarditis. I called my rheumy today & left a message, so I'm waiting to hear back from her. I can't get to the doc until Wednesday, as my honey has our car out of town until then.

    I just don't feel Rituxan is going to work for me. Cytoxan only worked very briefly & then almost killed me. I'm just very tired - I've been fighting my health for years & I'm just exhausted.

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