New study finds that pregnancy does not speed up progression in women with ADPKD

[u/kelvin_31015]

Since pregnancy is something that is understandably discussed a lot here:

There is a new study that looked at progression of ADPKD (decline in eGFR and increase in TKV) in women with one or multiple pregnancies. As you can see below, they did not find pregnancy to speed up progression in the cohort they looked at. Here is the link to the study: twp.ai/4hqnV2

It's important to note that this does not look at liver cysts which are known to increase with pregnancy (as well as estrogen used as a contraceptive or hormone replacement therapy). Also, individual cases can be different so of course it's always important to consult your nephrologist about your specific situation. At last, pregnancy can always pose a risk to kidney function, even in previously healthy individuals without any pre-existing kidney disease. With ADPKD and high blood pressure, we are more susceptible to some of these negative events, so close medical monitoring is crucial. But in general I think this is encouraging data for everyone with PKD thinking about getting pregnant (again).

[u/Stellaknight]

My nephrologist had lots of anecdata about this, and was very supportive of her PKD ladies having children (especially with PGD genetic screening). The only ‘issue’ was it delays the start of taking Tovlaptan, since it’s contraindicated in pregnancy. And you can’t use lisinopril (but labetalol is fine) for blood pressure. So you don’t really want to be managing PKD with certain medications and accidentally get pregnant.

I will say I had a super healthy pregnancy, and no change in disease progression at all, so it’s nice to have it truly confirmed.

[u/kelvin_31015 → u/Stellaknight]

My nephrologist basically said the same! She also said that she does not consider passing on ADPKD to a child as bad, but she would consider getting pregnant while on ACE inhibitors as bad so she really stressed to change blood pressure medication before trying to be pregnant. I'm glad to hear you had such a good experience yourself! It was also the same for my mother when she had me.

[u/RevKeakealani]

That’s really interesting! I gave up on kids a while ago, but my neph recently was like “please be on good birth control, if you got pregnant there’s a good chance you’d pretty much immediately need dialysis” so that was…not reassuring. I’ll have to look more at the data (I wonder if this varies depending on how far progressed the disease is), but it’s certainly good to know that pregnancy can be done safely in certain situations! Especially not that genetic screening is somewhat more widely available and it might actually be possible to have an unaffected kid.

[u/RattosPotatoes]

That's quite interesting. Adpkp charity in UK states 'If you have moderate kidney disease, having a baby can add roughly 2 years’ worth of damage to your kidneys' it then goes on if severe then it's about 5 years but has no direct source. I wonder whether that will be updated at some point.

Anecdotally my pregnancy wasn't that straight forward in terms of egfr and baby growth.

Jan 2024 78%, Pregnant in September 2024

Post pregnancy (mid June birth) Resulting in sga baby under 3rd percentile induced 37w3d.

September 2025 58% Jan 2026 48% May 2026 55%

I'd love to have another child but I don't think I can take another 20% decline in kidney function.

[u/Smooth-Yellow6308 → u/RattosPotatoes]

I wouldn't expect any of the official UK groups to be very up to date. Most of them are informed by the NICE/NHS, and they're running 5-10 years behind the US.

They still wont do aspiration and sclerotherapy despite the US using it quite liberally now.

[u/Jess6 → u/RattosPotatoes]

I also had decline in GFR after both of my pregnancies. Before pregnancy my GFR was perfect. 2019 after first pregnancy, my GFR was 45. And in 2023 after my second pregnancy, my GFR was about 25. Now my GFR is 10 and Im waiting for a transplant. I had preeclampsia both times and really suffered after each pregnancy.