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Thread: Did Rituxan NOT Work for You?

  1. #11
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    Quote Originally Posted by txrepub4God View Post
    I've been fighting my health for years & I'm just exhausted.
    don't give up.jpg
    The other day on the phone somebody asked me how I feel. Irritated with a tailgater, instead of the usual patent answer I blurted, "Like a bird pooped on my birthday cake!" but then I realized at least I could drive and talk on the phone! Many days I can't drive. I'm sorry you are having such a hard time now, it's a marathon. Don't get discouraged. Keep the faith. Each breath is a good breath.
    Best wishes,
    Tom
    ----------------------------------
    2 years untreated. Dx w/ biopsy - 2000
    Tx Plan:

    NUTRITION
    RESTORATIVE SLEEP
    RAISE ANABOLISM
    REDUCE ALL INT / EXT STRESSORS

  2. #12
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    Teri - I'm sorry it's been such an awful time for you! Sending you hugs and prayers! Please keep us updated!
    💕🙏🏼
    - Gab

  3. #13
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    Teri -
    Sorry for how you are feeling. I am new to the disease and this forum but from what I've seen here you have one thing you can depend on--you are not alone. And when you are fighting the fight we will work together to lift you up to meet the next challenge. Remember that this morning and every time you feel down. Reach out. Talk about it. And cut yourself some slack for having real human feelings.

    Best -
    Becky

  4. #14
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    Well said Becky!
    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

  5. #15
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    How's it going @txrepub4God ? Is ritux still making you sick?
    Have they texted crp or sed rate or ANCA score to see if you are improving? Just thought I'd check in.
    God bless!
    Gab

  6. #16
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    Terri - took a few months to see much difference although similar to Gab improvements in the lesions in my lungs were some of the first things that were noted

    Question about the pericarditis - when you lean forward do not notice any change in your discomfort?

  7. #17
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    Hang in there Teri. It takes time for rtx to work. Mtx didnt work for me. I vommitted like hell the imuran. I even tried plaquenil. Didnt work. Rtx started to work after 3 months, and only after second round (6 months later) and about 9-12 months since the first round, I got into remission. I was out of it once I got rtx in delay of 6 weeks.
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

  8. #18
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    Thanks for checking in on me. I've been pretty ill since I began the Rituxan. I've had so many doctor visits - gastroenterologist, rheumy, primary care doc, urologist, infectious disease specialist, OB/GYN, cardiologist, and I'm going to see a neuromuscular specialist in a couple weeks. The Wegs has attacked a lot of my organ systems, and it doesn't seem like the Rituxan has done diddly squat for me so far. For most of this year, I've had a UTI that my doctors have not been able to get rid of, even after rounds and rounds of different antibiotics. The urine cultures have shown I have a colonization of E.coli in my urinary tract, so I'm going to get 10 days of an IV antibiotic, then the urologist will do a cystoscopy to check out my bladder. I've also had a flare-up of my gastroparesis, which has now caused severe food aversion (I'm only eating fruit juice popsicles, graham crackers, and rice - been this way for most of the year), nausea, vomiting, plus blood and mucus in my stool and massive constipation. I'm having a colonoscopy on November 4th. Also, my rheumy referred me to a neuromuscular specialist, as the Wegs has attacked my nervous system. My grip strength, tremors, control, and numbness have gotten worse in my left arm/hand, and has now started on the right side, too, plus numbness in my feet now. I know my rheumy has mentioned in the past that she is concerned about my nerves being attacked by Wegs, as it could possibly lead to paralysis. I'm also experiencing issues with my heart, and the cardiac ECHO I had done showed some heart damage and mild murmurs. Both my parents died of heart disease (plus smoking destroyed their lungs), so this does concern me.

    Sheesh, it sounds like I'm complaining and whining a lot! I'm so sorry - it has just been overwhelming the past few months. I really had high hopes for the Rituxan. I'm still praying that it can kick my Wegs into remission, so we'll see. My last CRP wasn't positive, as it was up to 114.7 mg/L (the reference range showed that the highest "normal" number it should be is 4.9 mg/L, so mine is WAY over). For the time being, my PR3 in my ANCA panel was finally in the normal range for the first time in years (my C-ANCA and P-ANCA have always been normal except for 1 time my C-ANCA was positive), but because my symptoms are still so prevalent, my rheumy says I'm not in remission yet.

    I just hold onto this: "Then he said to her, "Daughter, your faith has healed you. Go in peace." Luke 8:48

    Quote Originally Posted by Gab122 View Post
    How's it going @txrepub4God ? Is ritux still making you sick?
    Have they texted crp or sed rate or ANCA score to see if you are improving? Just thought I'd check in.
    God bless!
    Gab
    Teri from Texas
    Diagnosed w/WG March 2015
    "Lord my God, I called to you for help, and you healed me." - Psalm 30:2

  9. #19
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    My goodness. That's why too much trouble going on. I'm going to have to pray for you more. 🙏🏼💕
    I don't think you sounded whining at all! On the contrary actually and you have plenty of cause to whine!
    🙏🏼 Holy God, please bless my friend Teri. Please free her from these diseases and symptoms and side-effects, and bring her your healing and peace! 🙏🏼

    ~ Gab

  10. #20
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    Sounds tough. I am sorry Teri. I hope that in time and after second round of rtx things will start to get better. are you on pred ? how much ? the lower pr3 can be a good sign. I also had countless UTI in my first year of rtx. tried many antibiotics. the UTI came back each time after I stopped the antibiotics. so I was on a maintenance half doze antibiotics for couple of months. it stopped it. I still get it from time to time but much less.
    I love the verse you quoted. sending prayers ♡
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

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