Newly diagnosed in Indiana

[CaraJ]

Hi everyone. Thanks for allowing me to join. I feel somewhat fortunate that I only suffered for a few months before being diagnosed. Some of you have suffered so much longer than me. I got my diagnosis 3 days ago, and I have been totally overwhelmed. Reading some of these posts has helped me feel less alone.

I am 50 and was perfectly healthy per my doctor in March. In Sept, I started running fevers,. lost weight, lost appetite, had joint pain, terrible fatigue. My platelets were high and white blood cells low. After a month, i was hospitalized and they couldn't figure it out. I saw a hematologist who sent me to a kidney doctor after my sed rate came back crazy high. My mom has lupus, and I did initially test positive for that but later the kidney doctor discovered ANCAs. My creatin level in 3 weeks went from a 2.3 to 9 and they immediately hospitalized me with kidney failure. After a lymph node biopsy, kidney biopsy, and bone marrow biopsy, they diagnosed me with Wegeners. I still have to be confirmed with a rheum but that's a few weeks away. I had 2 dialysis treatments which helped tremendously. I also started chemo infusion (Cytoxan) and prednisone in hopes we can get the kidneys to work on their own without dialysis. We will see. Getting this diagnosis was a shock, but reading the posts is helping. Thanks for listening.

[Pete]

@CaraJ

Welcome to the club no one wants to join. It seems your doc is using the “Fauci” protocol. It’s harsh, but it worked for me. I hope you won’t be on cytoxan too long. One of the longer term side effects is bladder cancer. I get a monthly urinalysis for peace of mind. (Almost 14 years in and so far so good.) If your doc didn’t tell you, stay well-hydrated and urinate whenever you have the urge. Cytoxan’s metabolites are hard on the bladder, so get rid of them as quickly as you can.

Although the disease went after my ears and respiratory tract initially, my current most significant concern is the kidneys. My creatinine runs in the 1.5-1.7 range and is stable. Even though I’ve been diagnosed with stage III chronic kidney disease, I feel fine and lead a pretty normal life for a 77–year old.

Hope you continue to improve. Let us know how you’re doing!

[CaraJ]

Pete,

Thanks for your quick reply. Looking back, my Weg's started with my ears and sinuses but my kidneys are my biggest concern as well. Since the Fauci method is harsh, no wonder I've had a rough time. My doctors are ordering weekly bloodwork to monitor me, but the yearly urinalysis is a great suggestion. I've only had 1 infusion of Cytoxan so far, but I need to keep the bladder thing for future reference. Knowing that someday I can live a normal life is reassuring. Thanks again.

@CaraJ

Welcome to the club no one wants to join. It seems your doc is using the “Fauci” protocol. It’s harsh, but it worked for me. I hope you won’t be on cytoxan too long. One of the longer term side effects is bladder cancer. I get a monthly urinalysis for peace of mind. (Almost 14 years in and so far so good.) If your doc didn’t tell you, stay well-hydrated and urinate whenever you have the urge. Cytoxan’s metabolites are hard on the bladder, so get rid of them as quickly as you can.

Although the disease went after my ears and respiratory tract initially, my current most significant concern is the kidneys. My creatinine runs in the 1.5-1.7 range and is stable. Even though I’ve been diagnosed with stage III chronic kidney disease, I feel fine and lead a pretty normal life for a 77–year old.

Hope you continue to improve. Let us know how you’re doing!