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Thread: Feedback -- Rituxan Failed

  1. #1
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    Default Feedback -- Rituxan Failed

    Hey everybody, I just joined today, and I'm in need of some advice or input if you wouldn't mind.

    I have had WG/GPA (whatever we're calling it today ) since June of 2010 right before my 25th birthday. I was admitted into the ICU after a CBC showed renal failure. I was also in respiratory distress. I was tested for every disease under the sun, lupus, HIV, many cancers, etc. I didn't respond to an anti fungal, antibiotic, or anything else until they put prednisone into my IV. Obviously, that made me bounce back within 24 hours, but they still couldn't figure it out. My ANKA tests were repeatedly negative. I was released, then ended up back in the ER five days later with a severe colon bleed. My HGB was down to a 6.0. I received blood transfusions and a colonoscopy with biopsy. The biopsy showed nothing. A kidney biopsy that was sent to Mayo Clinic showed nothing. There were granulomas in my lungs that left after pred treatment. They were unable to biopsy any of these granulomas because my airway was so inflamed it was compared to a "crushed straw". Again, the prednisone helped and I left the hospital without a diagnosis. 2011, I had another milder flare. Repeat with 2012. In 2013, I had a severe flare that saw my sed rate at 99 and my CRP at 11.0. Finally, I found a doctor who was willing to take me on. At first he thought I had polyarteritis nodosa because I have had no lung or renal involvement since 2010, but recently my doctor has arrived at GPA instead. Injectable methotrexate has had no effect. I had four Rituxan infusions two weeks apart. The first was on Halloween. My blood tests from Friday just came back today and my CRP and sed rate are at 4.7 and 76 respectively, WORSE than they were pre-infusion. Therefore, the Rituxan, the super expensive supposed-to-be miracle, has done nothing. As of today, I'm back on 40mg of pred and starting Cellcept. It's funny, because I feel okay, except for bowel involvement. I have had a lot of bowel involvement, which I guess is rare in GPA, but can happen. I also have joint pain and sinus ulceration. However, I go to work every day as a translator, and I'm able to keep up with cooking and laundry and housework and family and friends. My doctor tells me that inflammation that constantly high should keep me on my ass, but it just doesn't.

    I'm scared to death that nothing will work. Just looking for support and hopefully I can help some others along the way.

  2. #2
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    Rituximab generally takes 4-6 weeks for definite results. If my math is right, you had your last infusion around Christmas. You should be seeing improvement soon. Good luck!
    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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    Thanks Pete. I hope you're right. Since my first infusion was two months ago, my doctor was expecting some improvement by now. The fact that the inflammation went UP instead of DOWN is very discouraging. $100,000 of medication down the drain...

  4. #4
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    Although mine has worked quite quickly in the past I was advised by my consultant that it can take anything up to 6 months to be effective! Seems like a long time to me but am passing it on as information I was given.
    Diagnosed July 2009

  5. #5
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    I agree with dirty don I was told when I first started taking it that its full effect may not be seen until 6 months also I believe that since its a new drug doctors are being very conservative with the dosage amounts. I'm on it but feel my dosage needs to be increased to keep my sinuses in check it has helped my lungs. But my doctor is all over the place so I'm going to see a specialist in WG if you haven't found a doctor that's a specialist do so now because it can only help you. I think everyone on here will agree. Your flare up systems are very scary so do not be a lab rat for a non specialist. I'm not dissing your doctor I'm sure you trust him.a
    A specialist is best for a specialized disease.


    Sent from my iPhone using Tapatalk

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    I saw a WG specialist at the University of Wisconsin Hospital, one of the best in the Midwest, and he didn't want anything to do with me. He didn't even call me back. When I went back to see him again, he pretended he didn't know me. :-/

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    Bdawg212 don't let one persons ignorance be yours. You have to be able to trust your doctor. Find another one!! I know it's hard being sick and dealing with doctors nonstop but you have to know your self worth, and never let another person downgrade you.


    Sent from my iPhone using Tapatalk

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    My doc now is a rheumy and I love him. I'm just saying, I tried to talk to a WG specialist and he wasn't interested in my case.

  9. #9
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    Really what doctor was it? Is your blood test positive or negative?


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  10. #10
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    I don't even remember his name. It was in 2010. I have always been ANKA neg. The rheumy/immunologist I have now is the only one I have found that really cares about me and my case because I am not a typical Wegeners patient.

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