r/ADPKD

So my mother's side has adpkd like almost more than 50% of the people have it and i am seeing a pattern here
like my mother had really weak knees and other joints, her joints would make noise everytime she would walks,
she could not sleep properly in her final years (prob high urea) or something
she also could feel any taste in her late final years
and may people in my family (from mother sides) have really weak joints
i mean fingers make noise when they make a fist, knees making noise
even i have similar ones, jaw clicking too
are these things inter related as well? or my mind is superimposing pattern when they are not related to each other?

Hello guys i wanted to ask about higher carb consumption,i go to gym 5-6x week and weightlift so my carb intake is high around 550g per day and i wanted to know if its okay cause i read that cysts feed of glucose.

Hi all!

I come from a family of PKD'ers and am currently on Tolvaptan; eGFR in the 80's so still have a few years before my transplant.

I'm looking into getting a tattoo that means a lot to me and my family. I know to make sure it's from a reputable, licensed artist and to ensure maximum hygienic safety precautions are taken. That said, still wanted to check in.

1. Has anyone here had any difficulty with getting a tattoo with PKD?

2. Has anyone had recent tattoos cause any trouble with transplant chances?

3. Are there any other considerations/things to be mindful of? (Specific inks, etc.)

Would love any and all feedback!

Hi ADPKD community! Long time lurker, first time poster. I’m 26f with ADPKD diagnosed when I was 21yo. I did some MRI imaging over the years, but this last one I did is honestly freaking me out. I’m super depressed, unsettled, and am crying all the time. I want to post to see if anyone has experienced anything similar.

At Age 23, I was classified as borderline 1B/1C, and my neph put me as 1C because he really wanted to start me on Tolvaptan given that I’m young and could tremendously benefit from it. My current dose is 30/15 and I’ve been on this dose for 2 years.

Here are my TKV data points from MRIs 3 years apart -
Age 23: right 296, left 216 (TKV directly provided by Northwestern Medicine Radiology, not sure if they used segmented method or LxWxD to calculate)
Age 26: right 352, left 411 (My neph calculated it himself using LxWxD)

So my left kidney grew 90% in size, and total TKV grew 50% over 3 years…. Is that even possible? Most researches I read said annual growth for PKD should be around 5%, let alone that I’m on Tolvaptan….

My eGFR is still perfect >120, and my neph was also extremely confused by the results that he said it’s very very odd. He said that if someone’s kidneys really grew that fast, he’d expect BP issues and kidney function decrease, which I don’t have.

For context, I did this last MRI at a small outpatient imaging center to save on the big bucks, so maybe the radiologists aren’t as informed on PKD measurements. My neph asked me to send over the MRI images and he said he’ll ask their own radiologists at Northwestern Medicine to re-read them.

I’m sorry for the lengthy post, but as I wait for the process to go through, I am eager to see if there’s more information I could gather about this to be less worried.

Hi all! Anyone here also have with slow progression, normal kidney size, and normal eGFR but decided to take Tolvaptan? If so, why?

For context, I’m a 38yo female. I confirmed I also have PLD. Normal blood pressure, labs are all normal, and not currently impacted by the disease from a physical perspective as far as I can tell. My doctor has asked me if I want to go on Tolvaptan and my answer has been no so far. Any reason I should reconsider?

Hi everyone,

I’m looking to see if anyone in this community has experienced a similar headache pattern or gone through a similar diagnostic evaluation.

Currently on Tolvaptan 30/30 mg, I’ve recently developed a recurring headache that starts across my forehead in a reverse U-shape, then spreads throughout my head and lingers.

I don’t specifically feel this is because of Tolvaptan because I stay very well-hydrated, and I can easily spot the difference when I’m starting to get dehydrated. But I honestly don't know what sort of migraine thingy this could be, since it just popped up out of nowhere and keeps coming back.

I discussed this with a referral specialist. Their perspective was that in ADPKD, new or persistent headaches shouldn't just be assumed to be minor issues like dehydration or sleep disruption. To be cautious and avoid randomly taking pain medications that might unnecessarily burden the liver or kidneys, they recommended getting an MRI brain angiogram (MRA).

My recent lab reports show everything is operating normally, I am classified under Mayo Class 1D, and my kidney function is currently doing well with an eGFR of 123. However, I believe in checking things properly without making assumptions, so my MRI brain angiogram is already scheduled for next week to take the right diagnostic steps with my care team.
The specialist also mentioned that managing ADPKD long-term involves monitoring vascular and systemic factors (especially given any family history of high blood pressure or heart issues), which is why targeted imaging can be a helpful tool.

While I wait for my scan next week, I wanted to ask:

- Has anyone else on Tolvaptan experienced a similar pattern of forehead/widespread headaches?
- Have you had an MRI brain angiogram to evaluate headaches, and how was that experience for you?
- How do you typically manage lingering headaches when standard OTC pain medications aren't ideal for kidney/liver health?

Thanks in advance for sharing your insights!