I am new to the forums and I was wondering if anyone here has CKD. I was diagnosed in February 2009 after I had a physical (after 10 years of not having one) and my bloodwork showed reduced kidney function. I was referred to a nephrologist, and a rheumatologist, and after lots of bloodwork, 48-hour urine collection, an ultrasound, a CT scan, x-rays, and a kidney biopsy...they determined that I had primary Sjogren's syndrome, which caused distal RTA and bilateral nephrocalcinosis. It also caused interstitial nephritis where my immune system was actually attacking my kidneys and causing tons of inflammation. They put me on prednisone initially to bring down the inflammation, then Cellcept which I'll be on forever. I've tapered down from 60mg to 20mg of the prednisone and I can't wait to be off it. My kidney function has improved from 31% in March to 44% last week, so my doctors are pretty happy. The jury is still out on how the kidney stones have improved. My last urine collection showed my citrate levels were still low, so they increased my potassium citrate. I'm scheduled for another ultrasound in a month to see if the calcifications are smaller. I'm not really sure what the plan is for that.
It's definitely been a roller coaster this year. I had no idea that anything was wrong with my kidneys, but I'm sure glad they found it when they did. My nephrologist said that if it had gone undetected for 6 more months my kidneys would have been too damaged to avoid dialysis and transplant.
29 year old female (full-time accountant/part-time student)
Dx'd 2009: Primary Sjogren's Syndrome, distal RTA, bilateral nephrocalcinosis (calcium-oxalate), chronic interstitial nephritis, Stage 3 CKD, Raynaud's Phenomenon
Rx: Cellcept 500mg 2x/d, Plaquenil 200mg 2x/d, Prednisone 20mg/d (tapering), Urocit-K 3mEq 3x/d, hydrochlorothiazide 12.5mg/d, potassium chloride 20mEq/d, Restasis, Numoisyn, Nystatin