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Thread: More Rituximab Needed

  1. #1
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    Default More Rituximab Needed

    What can I say... I'm speechless now. Last week I got the results of my blood work and it was perfect! Yesterday I went to my Rheumatology follow-up appointment waiting to hear how amazing I'm doing. I was feeling perfectly fine as I do now. Unfortunately, it all appears to be fake good news. I was so excited that my kidneys are back at 100% I didn't see the massive amount of protein that leaked into the urine. Now that I'm aware of it, it still surprises me because I've had that before. ??? I was told that when it's that bad before treatment, it's more understandable, but to have all my symptoms creeping up on me only just 2 months after the double dose infusion, it looks like I need more Rituximab! I am ok with it but it makes me wonder if the original plan of 2 doses for maintenance therapy was too little and needed more of an induction therapy?! I've been in remission since January 2011 from Cyclophosphamide and I had been on Azathioprine ever since then. Back in 2011 I was told that Cyclophosphamide is only good for 18 months. So since I got 12 full years, it doesn't surprise me that I needed Rituximab...but not as maintenance to start. It all makes sense what they told me yesterday but I was so confused that I need more when I feel fine. Usually I complain about a lot of minor things, pain, stuffiness causing nose bleeds, etc. But now the lungs seem to be an issue which is why Respirology was called into the picture. I thought that active disease is what hurts the kidneys. I had no idea that you could be in remission and still have kidney function decline as a result of excessive protein leaking into the urine!!! Did you guys know that? I often wonder if I'm as knowledgeable as I think I am. Then again, I've never been to this point in my life, so I guess new learning starts here for me. The term used was, "The disease is still grumbling..." I think the extra dose of Rituximab is to make sure that there's no trace of anything. Am I scared? No. The good thing is that they told me they're prepared to get detailed documentation ready for the Insurance company because they love to decline patients for anything. At least I know they're advocating for me big time. The goal is to try to avoid dialysis. I've been in this spot before in 2009 hearing that I have had RPGN, Rapidly Progressive Glomerulonephritis as a result of severe anti-Proteinase3 Vasculitis. Back then I couldn't pronounce any of those words, nevermind knowing what it all means.

    On a better note, thank you everybody for all your input over the years! I could never have prepared for any of this without your help. I know we've lost some people along the way; which scared me at the beginning but I always held onto hope. I kept telling myself, there's no way bad news has to be a lifetime thing. Something good has to happen at some point.

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  3. #2
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    Default Re: More Rituximab Needed

    Iím thinking a consult with nephrology is in order. I have stage III chronic kidney disease as a gift from GPA. Creatinine is consistently elevated and eGFR is consistently low. Like you, I feel fine.
    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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  5. #3
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    Default Re: More Rituximab Needed

    Quote Originally Posted by Pete View Post
    Iím thinking a consult with nephrology is in order. I have stage III chronic kidney disease as a gift from GPA. Creatinine is consistently elevated and eGFR is consistently low. Like you, I feel fine.
    I was thinking the same thing, Pete. Only because they've put other procedures in place I went along with it and didn't question it. Next week Wednesday, November 24th is the CT scan of my lungs, then on the 26th will be the actual scope. Last time I did that they didn't find anything so they went in the other way, colonoscopy and also didn't find anything that way. I think they took samples in that scope, which they're going to do this time. I think there is scaring since the first attack in 2009 and it probably didn't heal at all. Now add in Rituximab making me more immunosupppressed. My guess is infection. The scary thing is the kidneys decided to creep up on me because all the attention is on the lungs now.

    So you have stage III kidney disesase as a result of cANCA GPA?? Do you feel any different at all?

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    Default Re: More Rituximab Needed

    @Chadwyck

    I donít know for sure if GPA gave me CKD. Other than secondary indicators (creatinine and eGFR), no one had taken a direct look at my kidneys. When I fell in 2019, I had a thoracic CT that showed some benign cysts in both kidneys. That didnít surprise me because my Dad also had them. Other than issues relating to GPA, I canít say that Iíve felt anything other than healthy.
    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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    Default Re: More Rituximab Needed

    Sorry to hear that you are going through this Chadwyck, but it does sound like you have some good Docs. Hope you can get good results from the Rituximab. Be well.

    Kathy

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