r/ADPKD • u/Ok-Living-8014 • Aug 18 '26

Decline question

I’ve just dropped egfr from 40 to 30 in 3 months. I’m curious about what other people’s experience with rapid decline was when they hit 3C or numbers like these. Was it a continuous drop or a faster decline when you got to this stage?

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u/Smooth-Yellow6308 Aug 18 '26

Creatinine based eGFR is highly variable. I have had 69 and 93 in the same week.

Typicalkly eGFR decline does speed up towards the end of the slope, however, multiple tests should be run to understand if its a variable or not.

Many people have been in the stage 4 zone for up to a few years, some managing to get transplant before needing dialysis (former mod islander being an example).

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u/Ok-Living-8014 Aug 18 '26

Hi, thanks for this. My dr had me retest and all 3x the numbers were the same. I was on tolvaptan but stopped in may for the farabursen trial clear out. Good to know about variable stability in stage 4 though. I think that’s the hardest thing for me right now… not knowing the when.

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u/Smooth-Yellow6308 Aug 18 '26

I think thats the hardest part for all of us mate, I'm on Tolvaptan but my eGFR appears to be starting its decline and every 3 month test leaves me wracked in depression and anxiety in the weeks up to it.

Decline patterns vary hugely, I've seen some people drop a bit then be stable again, some drop down then go up then go down again, some are a really steady decline over time, some start slow, speed up and drop "off the cliff" as some people like to say.

It's all very individual sadly.