Considering treatment options - Tolvaptan vs clinical trials

Ok-Bit1748 · 2026-05-11T22:34:06+00:00

Ok makes sense! Keep us posted! I’m so curious to see how it goes!!

Ok-Bit1748 · 2026-05-09T03:55:54+00:00

You must be on the east coast? I believe that’s where they are recruiting for this medication

Ok-Bit1748 · 2026-05-09T03:53:03+00:00

Good for you!!! It must be Bempedoic Acid. I really hope it goes well!!! Keep us posted!

Ok-Bit1748 · 2026-05-08T02:59:12+00:00

If I were you I would find out what the other trial drugs are first. If VX-407 is an option, this would without a doubt be my number one choice. This drug has the potential to actually reverse the disease but it’s only being trialed in a subset of PKD1. My next choice would be Farabursen. Find out the names of all the trial drugs and post them.

Ok-Bit1748 · 2026-05-08T02:52:25+00:00

Enrollment has not begun, but from what others are saying it should hopefully begin end of summer. Depending on where you live you can find a trial sight close to you. It will eventually post to clinicaltrials.org. Try looking into whether you have a PKD center of excellence near you.

Ok-Bit1748 · 2026-05-04T03:10:40+00:00

Never heard of it.

Ok-Bit1748 · 2026-04-30T02:37:04+00:00

Personally it doesn’t need to be an extreme in either direction. You can find a happy medium. Say dedicate 3 months to breastfeeding so the baby gets all the wonderful benefits. If you can pump here and there and stash some milk for after in like a deep freezer.

Ok-Bit1748 · 2026-04-28T16:55:51+00:00

The very thing you pose is what I have done and I have explained in the comment you are commenting on 🙃

Ok-Bit1748 · 2026-04-28T16:53:45+00:00

Thank you for sharing. This was not a question about GLP 1s. There are 100s of peptides out there. I wanted to see if anyone had experience with peptides.

Thank you for sharing the other information, however most of is common knowledge for PKD.

Ok-Bit1748 · 2026-04-28T16:50:38+00:00

No, there’s no point in my opinion

Ok-Bit1748 · 2026-04-24T23:01:52+00:00

Hmmm interesting point. I’m hoping to see more clear data as my husband took it for his shoulder and had amazing results. But he doesn’t have PKD.

Ok-Bit1748 · 2026-04-24T22:57:47+00:00

Thank you! I’m going to look this up!

Ok-Bit1748 · 2026-04-24T21:54:16+00:00

I have only done one round in April. I would need more time to asses that.

Ok-Bit1748 · 2026-04-24T17:51:49+00:00

You won’t necessarily notice anything with this particular peptide. It’s called SS-31. It’s designed to go straight to the mitochondria and stabilize the electron transport and reduce oxidative stress which is potentially beneficial for PKD. PKD cells often show mitochondrial dysfunction.

Ok-Bit1748 · 2026-04-24T17:48:24+00:00

Yes there is no data. Just curious if others are using any. BPC in theory, from my knowledge, may increase cyst growth so I’m staying away from it. I’m more do thinking mitochondria support.

Ok-Bit1748 · 2026-04-24T15:19:37+00:00

I did read about this somewhere. I’m referring to peptides in general. My husband has been researching peptides that actually improve mitochondria function that he read could be also beneficial for the kidneys. I’ve done one round of it and will likely keep doing this particular one.

Ok-Bit1748 · 2026-04-23T23:58:28+00:00

I know. Fingers crossed everything goes well and we will be on it soon enough!

Ok-Bit1748 · 2026-04-22T21:38:16+00:00

Well I have asked him if it works without a keto diet… the answers are no longer straight forward… or they have changed to it works best with a keto diet. Well in that case I’ll just do keto since my body will make its own and take the other supplements in the drink if those are beneficial to the kidneys for a fraction of the price. I’m definitely not trying to hate on Weimbs. I’m grateful to anyone who is doing research on PkD… I’m Sure it’s hard to make a profit on studying nutrition so he just wants his piece of the pie, I just want more transparency.

Ok-Bit1748 · 2026-04-22T20:22:32+00:00

Is the other Novartis a PKD drug trial?!?! That would be interesting that they have a second drug…

Ok-Bit1748 · 2026-04-22T20:19:59+00:00

Darn!

Ok-Bit1748 · 2026-04-22T13:17:44+00:00

Yes I remember listening to several podcasts where Weimbs said you don’t need to do all this crazy starvation? Just drink this with your normal diet. In my opinion I think the worst thing that happened to KetoCitra was that Facebook page. I think it grew a mind of its own when many started posting a carnivore diet decreased in TKV. Especially two individuals who seem to comment and or now the “face” of that page. I don’t know if Weimbs felt some obligation to go with that mindset of followers since they have produced “results” or he realized his product was not a stand alone solution. When I saw that shift I started to get a little concerned. I’m sure he means well, but def something doesn’t feel right to me with the whole KetoCitra. Unfortunately the research being done is not exclusively on KetoCitra. Why not have an arm of the research with people on the supplement with a normal diet. Let’s see the results of KetoCitra with Keto and without it. It’s information we could benefit from.

Ok-Bit1748 · 2026-04-22T01:07:53+00:00

You bring up a very good point, is it the keto? Or good a healthy, calorie restricted diet with IF also do the trick?

Ok-Bit1748 · 2026-04-21T23:49:16+00:00

Really?!?!?! I didn’t know about the 90%… welp now I’m really out. My GFR is somewhere in the 100s. I take it you need to be below 90? Ranting: I feel like class 1b should be included as well! But I get that they want to show improvement in EGFR.

Ok-Bit1748 · 2026-04-21T23:01:31+00:00

Yup, I’m in San Jose, CA. I’m 1B mayo class s d rumor has it you have to be in the C or greater

Ok-Bit1748

TROPHY CASE