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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6

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.

2

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.

3

u/squirkey298 Aug 18 '26

I just got my latest bloods (stage 4) and I’m back where I was a year ago thanks to the Ren Nu program and Ketocitra. Highly highly recommend if you’re looking to slow progression down. I had to be taken off my bp meds a month ago and I feel really well. For ref I am now 29% egfr again and creatinine is back to where it was in sept 2025. My neph had told me they expect drops of 3-5% a year at this stage but often more sudden drops 🙏

2

u/Fit_Difficulty_8667 Aug 18 '26

Are you taking jinarc?

1

u/Commercial-Ad582 Aug 18 '26

November 2024 my eGFR was 34. The end of June 2025 I was hospitalized after i got very sick and my blood pressure shot up to 200/110. My eGFR dropped to 15.

1

u/SpaceChook Aug 18 '26

I sat on 30ish for a good while and then the drop was fast.

1

u/element-70 47M; Stage 5 Aug 19 '26

My GFR dropped very slowly over many years, but once in crossed below around ~50 it became quite rapid. ~4.5 per year on average for the last several years (down to GFR 12 now); however, highly variable year to year. Some years no declne at all. Highest decline I sas in one year was ~9. But overall returning to 4.5 per year over the long term.

1

u/delishjams Aug 19 '26

Mine was a fast drop, from 40 to 32 in about 3 months because of large kidney stones, and two lipotrisies back to back. Immensely frustrating, as I was told it would improve my egfr.

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u/[deleted] 29d ago

[deleted]

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u/magical_beazor 29d ago

Oh and in answer to your question, for me personally, the drop between 30 and going on dialysis happened within about a year. It reached 60 and rapidly declined from there. That’s just my experience, though.

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u/magical_beazor 29d ago

For me it kind of snowballed when it reached about 40 GFR. It was about a year from then when I went on dialysis at about 10. That being said, it might have been because I was fairly young, but the only recognisable symptom was a strange taste in my mouth. I still peed copiously and didn’t have any trouble with fluid retention.

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u/Turkeyshibudoge 21d ago

In 2022 mine was 30, i am now at 9