Polycystic Kidney Disease (PKD) Support Group

Polycystic kidney disease (PKD) is a progressive, genetic disorder of the kidneys. It occurs in humans and other organisms. PKD is characterised by the presence of multiple cysts (polycystic) in both kidneys. The disease can also damage the liver, pancreas and rarely the heart and brain.

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Kidneys & Bladder
/ Polycystic Kidney Disease (PKD) Support Group

EPO

Chewitt
Chewitt

Does anyone with PKD have any experience of needing EPO injections? I've been told I will need these, though unlike with other kidney diseases, it's unusual for PKD patients to need EPO. My Hb remains low despite an IV iron infusion so it seems EPO is the way to go for me.

librarylil
librarylil
I’ve had low red blood cell counts, low hemoglobin & low hematocrit for years, so obviously, I’ve also been anemic for years. I didn’t receive any iron infusions, though, because my anemia wasn’t based on low iron. My iron is fine. My hemoglobin was at 10.1, & I wanted EPO shots, but they refused. As I understand it, for EPO shots, your hemoglobin must be below 10. I wish I could get just under 10 to get the EPO. I’m sure I’d feel a lot better.
Chewitt
Chewitt
Hi there,
My Hb went down to 9.5 but came back up to 10,and it seems to hover around 10. I therefore haven’t commenced the EPO, but I don’t really mind. I’m inclined to think my anaemia isn’t really about low iron, but more the anaemia of chronic disease. I also have a raised CRP now, indicating inflammation in the body. I’ve read that IV iron isn’t good for this.