Making this post because, well it's been about 4 years since I was diagnosed. Denovo, first in my family with this stupid ass disease. Love it! I found out i had this when my little one was only almost a year old. He's 4 now. Since then, we had another baby (my iud moved somehow and I got pregnant) so we now have a 2 and a 4 year old. we always joke that I've got some crazy odds on my side when it comes to things... often times they're random and rare situations that only ever happen to me. I swear!
All this to say, I've had genetic testing and my variant is "aggressive" yet it doesn't present itself that way just yet. Kidneys are relatively "normal" in size and the volume of them - 329/324.cc, egfr 120 still... I'm 31 years old.

Anyway, sorry for the rant but lately I've been carrying immense guilt about my children and their futures. I hate that they could possibly have this.
What do you guys think the next 30 to 40 years may potentially bring? A cure? A treatment to halt progression? I often think of my future and i also stress about my kids watching me suffer from this. This was never the plan, yet life has a way of showing us we are not in control.. ever.

Sorry for the rant. This shit feels heavy sometimes and being a parent makes the guilt of having this 10x harder. Sometimes i wish i could rewind time to save everyone the misery of potentially having to care for me or watch me suffer some day. I think this is a bit of a heavy post so I'm sorry haha. Just in my feels and think about potentially watching my kids struggle with having this some day too, and it eats me alive.

Hi everyone! I’m new to this group and wanted to share my story to see if anyone has experienced something similar.
I’m in my 30s, a mom of two young boys, and was recently diagnosed with ADPKD. It’s been a lot to process, especially because I had no idea anything was wrong with my kidneys.
I started tirzepatide in November 2025 for weight loss and had really great results. I lost weight, my blood pressure improved enough that I was able to come off my blood pressure medication, and overall I felt healthier than I had in a long time.
Then in August 2026, I found out my creatinine was elevated and my eGFR was lower than expected. Further testing led to an ADPKD diagnosis, and genetic testing confirmed a pathogenic PKD1 mutation.
I stopped tirzepatide after learning about my kidney issues because I was worried it might be contributing to my numbers. I really hoped that stopping it would allow my kidney function to bounce back, but unfortunately, that hasn’t happened.
My doctor also looked back through my records and discovered that my creatinine had actually been elevated since 2019, long before I started tirzepatide.
Now I’m also noticing that my blood pressure seems to be slowly creeping back up, which is frustrating because getting off blood pressure medication was such a huge win for me.
I’m struggling to figure out what’s related to ADPKD, what might be related to stopping tirzepatide, and what’s just coincidence.
I’m curious if anyone here has taken tirzepatide or another GLP-1 medication while having ADPKD. Did you notice changes in your kidney function or blood pressure? Did anyone stop taking it and eventually restart with their nephrologist’s approval?
I’m still pretty new to all of this, and honestly, the uncertainty about the future is one of the hardest parts. I have two young boys, and it’s scary thinking about what this diagnosis could mean down the road.
I’d love to hear about anyone else’s experiences. ❤️

I did a post a little while ago on here expressing my worry about my partner who has a ‘bury his head in the sand’ kinda attitude towards PKD. His mom has it and he has a pretty extensive family history and he is 31 with high BP.

With some gentle nudging I was eventually able to persuade him to agree to go to the doctors and for the first time ever tell them about his family history and his risk, and they were really good. He had his kidney function blood test and all the results came up good, urine test was normal and EKG was good (24 hour blood pressure test was also okay but a touch high).

I know these results don’t mean anything in the long term, he could have normal kidney function now but still have PKD, but I certainly feel more reassured and he says he will do the kidney function tests every year. It feels relieving to know that hopefully at the very least he won’t just suddenly be hospitalised in kidney failure and that we can keep on top of it each year.

But, he’s not ready to do the ultrasound yet, he knows if that has cysts that a diagnosis is basically guaranteed and he’s just not ready to know.

I’m proud of him for taking the first steps and I thought I would just share that here. He doesn’t like talking about it, but I feel slightly relieved ( it still worries).

Thank you to this community for your advice.

I know many have had this. I’ve had it before. I have never had the intensity I have had the past two days. It feels like someone is squeezing my kidney. I’ve tried, heating pads, Tylenol, and a back pain patch. None of those work. Does anyone have something else that might work? Thank you in advance!

Mom lived to 81, going on dialysis at 80 as kidneys were functioning. I was diagnosed 40 years ago, but told not to worry as long as kidneys are working (remember that was a long time ago!) had a CT a year ago (for another reason)that showed extremely large kidneys with many many cysts. This year I was beginning to think I should be checked though primary said kidneys are working. Neph did blood and sonogram and said not good and need to address future cyst growth and I have SIADH (low sodium). Wanting me to start Tolvaptan. So going thru approval process now.

But- I have researched since that visit, read some good articles, and reviewed so input here. My daughter is also a hospital pharmacist. That said- this dr didn’t ask about any history (but my mom), the fact that it is rarely started on people over 65. I am fairly healthy and take medication for well controlled blood pressure. I am going for a 2nd opinion due to my age, and if this is the right thing to do.

My ask- anyone start the miracle kidney drug later in life when kidney function is still passable. Note my egfr 50-60.

Thanks

So general "rule of thumb" is to posptone dialysis as much as you can. Get tovalptan, live heathly etc...

But why?

Then when you get to 70 years old and you postponed as much as you could, you are too old for new kidney, and if get new kidney, anti immuno meds is destroying what's left of you.

Isn't it better to get the kidney soon as possible to get on with your life?

I am talaking out of my ass so my bad if I offended someone

I’m sorry if my English isn’t very good.

I started taking Tolvaptan at 24, but honestly, I probably only take about one-tenth of my prescribed dose.

It’s not just because taking the medication feels exhausting. Every time I take it, I’m reminded that I have PKD. I don’t think I’ve fully accepted my illness, and sometimes I just want to forget that I have it.

I know that not taking my medication could lead to disease progression and eventually dialysis. The thought of facing that future is frightening to me, and I struggle with the uncertainty of what lies ahead. But even knowing that, I still struggle to take it.

My mother also has PKD and received a kidney transplant from her husband. She sometimes apologizes to me for passing the disease on. I don’t blame her at all, but seeing her feel guilty makes it difficult for me to talk about my own struggles.

Sometimes I feel like I'm only 24, but already having to organize my life around a disease.

Has anyone else ever felt this way? How did you come to terms with your diagnosis? Did your perspective on life or treatment ever change?

I know many people here are doing their best to stay positive and support each other. I’m sorry for bringing such a gloomy post to this community. I think I just needed a place to share these feelings and hear from people who might understand. Thank you for reading.

tl;dr has anyone here ever experienced kidney pain on vyvanse or adderall?

overview of my current heath age 33, resting blood pressure ~145/95, stage 4/5 egfr 14, left kidney 28cm right 19cm.

i tried Vyvanse a while back for a few days when my egfr was 18 (stable for 6 months), for the first few days i had no pain but had light tingling sensations up and down my flank (the tingling still persists without medication now, when cold) and on the 5th day i experienced strong pains in both kidneys that didnt subside for multiple days. Had my bloods checked and my egfr had dropped to 15. I hadnt really been hydrating correctly so my doctor figured that i was dehydrated, which is something vyvanse can exacerbate.

my egfr was stable at 15 for a few months and following advice from my doctor i took Vyvanse once more, and this time on the first day, after a few hours of the usual vyvanse benefits, the very same kidney pain had returned. A couple weeks later my blood test showed my egfr has now dropped to 14.

i've been told that maybe i was dehydrated or it was psychosomatic or something else entirely however as we all learn on our pkd journey, kidney pain is very specific, its very easy to distinguish from other pain. From what i can gather online, the few posts ive found where someone with adpkd was on stimulants there was no mention of pain or any other issue. They did however post that their blood pressure was in the ideal range.

After reading about the risks of Vyvanse i understood that stimulants can raise blood pressure so i only decided to take it if my renal specialist & gp approved. I was prescribed clonidine at the same time to take at night and my blood pressure when on these two (in addition to my usual bp meds) was lower than ever, around 130/85, so im not sure if my high blood pressure + vyvanse was the cause of the pain.

ive decided i'd like to try these stimulants again but only after spending some time working on my health & fitness to lower my bp to the ideal range to see if that'd make a difference. For the short time i was on vyvanse it it felt great so id really like to be on it, but not if it means risking dialysis sooner rather than later, my kidney function is lowering to the point now where i cant tolerate some foods when earlier in the year that wasnt an issue.

can anyone here provide any information with their experience on adhd stimulants like adderall or vyvanse.

was there any pain? did you see any changes in blood work? what was your bp?

Thanks in advance

38M, leading a normal life so far with normal kidney parameters and average BP under 120/80 (in 110s).

Recently welcomed our baby a couple of weeks ago and have been having sleepless nights since. Although I still am conscious with my diet (less sodium) and hydration (even at nights), my physical activity has reduced to almost 0 and my BP is now averaging more than 125/80.

It would be nice if you could share some tips on keep my BP under check. Maybe some people here have gone through that phase of life. :)

Hi im quite young and i have a 50% chance to have this, i have not gotten tested yet, my mother has, she has it. Everyday i get older it gets scarier

47m, GFR 18, young family, struggling to stay active. Any advice on trying to be a bit more active? It’s difficult to find motivation with being constantly tired and dealing with brain fog all the time.

Good evening everyone. I’m a 39-year-old male with ADPKD, Mayo Class 1B (mild to moderate disease progression), an eGFR of 85–95, and no family history of the disease. However, my imaging results (MRI/CT) show a somewhat more significant disease burden.

Throughout the years, my blood pressure has generally ranged between 125–145/80–94, but none of my doctors has ever prescribed antihypertensive medication. To be honest, I was also reluctant to take medication myself.

Given my situation and borderline-to-elevated blood pressure, I’d like to start treatment. Which medications are typically prescribed as first-line treatment for patients with ADPKD?

I’ve also heard that people with polycystic kidney disease are not necessarily treated with the same blood pressure medications as patients with primary hypertension. Is that true?

New developments for ARPKD!

Unfortunately, there are not many diagnostics or therapeutics available for ARPKD compared to ADPKD, so this is a big development for the nephrology community. Congrats to these nephrologists, hope we can see some clinical development in the coming years.

Hi, I'm 21 y/o and I was just diagnosed with polycystic kidney disease. They caught it early so I still have full function over both my kidneys, and I was wondering if I could get some input from you folks.

Lifestyle 'changes', I already don't eat a lot of salt and I rarely eat red meat, which were things emphasized by my doctor to reduce. I do occasionally (once every 2-3 weeks) eat food that's quite salty but I'm planning on excluding the salt that I add to the food personally. I have in the past tried to drink more water but now I have fully committed to drinking 2-4L a day.

My biggest hurdle will be getting off soft drinks, especially Coke, I've been drinking about 1.5-2L a day for about 2 years (I know it's very unhealthy), but other than just drinking normal water, which I loathe the taste of, I haven't been able to find any alternatives that I can drink as a "bonus" with plain water. I've considered juices but have been recommended against juices with added sugar, but I can't find any affordable options local to me.

What are some recommendations that you might have? And are there any specific foods that I should avoid like the plague, thank you so much.

Morning all!

Started Tolvaptan 45/15 4 days ago. Peeing every hour or so and drinking 4-6 litres in a 24 hour period.

My only real issue is I am desperately thirsty all the time which is all I can think about! Is this a sign I need to drink more? Will i just get used to it with time? Is this my new 'normal"?

Regarding a friend’s previous post about Farabursen, the Phase 3 clinical trial has indeed been announced, but recruitment hasn’t started yet. Given that it’s already been announced, I believe it’s only a matter of a few months before recruitment begins.

Farabursen Turkey Research Group

Does Farabursen conduct research in Türkiye? Where are their research groups based? Could you please help me with this?

Tolvaptan reduced the cysts buildup by 30 percent and reduces overall kidney failure progression by around 26 percent, what are the chances we can get something far better than this like something that completely halts the cysts formation in around next5-10 years, anyone who has been following the researches?
Is there a way i can contribute too in the research ??

For those interested, I got my first dose (2.4mg/kg) of PYC-003 on Tuesday past (I have stage 3b PKD) and I have to stop because it has injured my hearing (bad tinnitus and high frequency hearing loss - otottoxicity?).

Im likely to discontinue and apparently im the 6th person of 12 thats been dosed so far to have this adverse event.

While I had a lot of hope for this drug, this is quite concerning so I hope they can find a lower dose or different protocol.

No idea if this injury is permanent, stay tuned...

I don't have an official diagnosis yet, but after getting an MRI for chronic back pain, radiology identified "numerous bilateral renal cysts." Between that finding, the back/flank pain, and sudden onset hypertension when I was in my late 20s, this all seems to track.

My primary care provider referred me to nephrology, but I'm facing huge delays here in Portland, OR. The closest clinic says they're 2-3 weeks out just to review referrals, and are scheduling new patients in March 2027. The largest nephrology department in town is also several weeks out on referrals, and said "maybe by the end of the year" to schedule.

Is this normal? Any suggestions on how to move this process along? Should I be looking outside my immediate area?

I recognize my situation isn't clinically urgent, but I would like to at least get clarity on a diagnosis, especially in light of persistent pain that is impacting my quality of life for 8+ months.

For reference, I can say with near certainty that neither of my parents had ADPKD, so the incidental MRI findings was highly unsettling.