Doctor's Visit update - May 4 - heading a new direction

Yesterday I had my first "post-hospital" follow-up appointment with my nephrologist. While we got some good news - my white blood cell counts are higher - 7.5 - which allows me to go back to work when I'm ready (this coming Monday), there were also some things that are pretty concerning. With everything my body has been through with the hospital and all the infections, my kidneys have taken a pretty sizeable hit. My creatinine levels are now at 5.57. Technically, I should be on dialysis now. We are still hoping to avoid that, though. My doctors (Dr. L. my rheumatologist and Dr. C. my nephrologist) are devising a new treatment plan for me. It's a somewhat experimental treatment plan using an infusion drug called Rituxan. There have been some recent studies that have shown it to be very effective in the treatment of Wegener's granulomatosis. Some of the side effects can be pretty scary, but I'm hoping that is simply because I've been researching online, which sometimes has some pretty adverse effects listed. So, next week, on the 12th, Mike and I are going to see Dr. L. to find out more. From what I understand, I would be able to stop or greatly reduce prednisone (thank GOODNESS!!!!!!) and the cytoxan. This Rituxan drug would bascially kill all my B cells, similar to chemo. It's an infusion drug, so it would happen at one time, which might produce some pretty strong side effects like nausea and fever and chills. But hopefully, the negative side effects would be fast, rather than lingering like the oral medications.

One of the biggest challenges will be insurance. Thankfully, the doctors are fighting that fight for me, pulling studies and writing letters to get me started. The other thing that makes me nervous is that this is the only other alternative treatment known at this time. So it needs to work. It really needs to work. Right now, we're still very "blind" about the details, so there's not really anything to be scared of, I suppose. I think it's more of a blind hope. Just hoping for something to make me feel normal again. I'm so ready to see my face again, to feel strong and youthful again. What's odd is that I never really FELT sick before. But now, after all these infections, and with my kidney function down to about 8-9%, I'm feeling it. My body feels heavy and weak with toxins. As much as I don't want dialysis, I do feel like I could use a good cleaning. So hopefully we can start this new medication soon so my kidney function will improve so I can feel better. I'm ready for whatever is next on my path... and I'm ready to take that step. I suppose I have to be patient and wait for these infections to fully clear, but hopefully this new direction with get things moving. I've been in treatment since Jan. 18, so we're narrowing in on month 4, with still very little stabilization. Because of the infections, I'm considered "refractory", meaning that the chemo/steroid mix isn't working for me. Hopefully, that's all the insurance company will need to know.

I'll post more information about this Rituxan treatment as I learn more. I've read positive reports, and Mike has been researching up a storm. It's still a long road ahead, but hopefully that road won't be covered in thorns!