Kidney numbers dropped

I have had polycystic kidney disease for many years. Diagnosed in 1998. My GFR is 28%, creatine 1.9. I was placed on Jynarque 5 months ago. At that time my GFR was 35%, creatine 1.6. I am concerned my numbers are worse than before. My nephrologist keeps saying I'm stable, but shouldn't I be seeing some improvement?? I have no symptoms of kidney disease other than these numbers . No swelling in ankles, no back pain, no UTI"s, no kidney stones. Any suggestions or recommendations?? Thank you!

@susangail53 I wonder if you could have a Cystatin C done. The creatinine base, my nephrologist says, is affected by many things (including muscle loss) and the Cystatin C version of the eGFR for me has been higher and more stable. My doctor says the truth may lie somewhere in the middle but the Cystatin C was encouraging at a time when my other eGFR was 36.

I have never heard of this test, but will definitely mention this to my nephrologist. I wonder why he hasn't suggested this?🙄

I have had polycystic kidney disease for many years. Diagnosed in 1998. My GFR is 28%, creatine 1.9. I was placed on Jynarque 5 months ago. At that time my GFR was 35%, creatine 1.6. I am concerned my numbers are worse than before. My nephrologist keeps saying I'm stable, but shouldn't I be seeing some improvement?? I have no symptoms of kidney disease other than these numbers . No swelling in ankles, no back pain, no UTI"s, no kidney stones. Any suggestions or recommendations?? Thank you!

I have had polycystic kidney disease for many years. Diagnosed in 1998. My GFR is 28%, creatine 1.9. I was placed on Jynarque 5 months ago. At that time my GFR was 35%, creatine 1.6. I am concerned my numbers are worse than before. My nephrologist keeps saying I'm stable, but shouldn't I be seeing some improvement?? I have no symptoms of kidney disease other than these numbers . No swelling in ankles, no back pain, no UTI"s, no kidney stones. Any suggestions or recommendations?? Thank you!

@susangail53 Welcome to Mayo Clinic Connect. The medication your doctor placed you on is to treat Rapidly progressing PKD. Does he consider you to be in that situation, even though your diagnosis was 25 years ago? What has changed over the last few years? Do you have other comorbidities, like high blood pressure or diabetes? Decreasing kidney function can be caused by medication response, and we want to look at trends over time. A single test result could be because of dehydration, or a recent infection, of medication side effects, so please remember that.

Do you have plans to be evaluated for kidney transplant, seeing that PKD is a genetic factor? If so, have you started your quest for a living donor?
Ginger

I seem to get more and more confused being that gfr or creatine which one is more important?

He placed me on Jynarque to slow the progression if the cysts. My great grandmother, grandmother, and mother all passed away with PKD. My kidney function was 53% six years ago. At that time I was diagnosed with rectal cancer and went through chemo and radiation. I was told it wouldn't harm my kidneys. Well, it did. My kidney function went
from 53 to 29%. Since that time, it has stabilized, or so he says, around 28-35%. My function was 35%when I started this medication 5 months ago. My blood pressure is normal 118/78. I do Zumba and strength training 5 days a week. I drink 8 bottles of water a day. I do not eat red meat, but fish and chicken occasionally. I have no ankle swelling, no back pain or other kidney related issues. I weigh 123 pounds and I'm 5'2". As far as a kidney transplant, who would give a 71 year old a transplant??!?