Chadwyck
11-10-2023, 03:19 PM
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. :biggrin1: 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.
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.