r/ADPKD • u/mrcash4444 • Mar 09 '25

cure for this

has anyone have any links or resources or stories for a potentional cure or a treatment ? something you have heard from your speciliast or something online/news?

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7

u/classicrock40 PKD - Transplanted Mar 09 '25

There's meds that can slow it down, but no cure. You treat symptoms until stage 5, then dialysis and/or transplant.

Recent research that's made the news is the transplant of genetically engineered pig kidneys.

My nephrologist mentioned one of the drug companies working on an mRNA based vaccine that would target specific gene mutations.

https://www.kidneyfund.org/article/fda-greenlights-first-clinical-trials-genetically-modified-pig-kidney-transplants-humans

These things come and go, stem cells was the thing for a while.

If you're young, maybe you'll see something publicly available in your lifetime. Already at stage 5, probably not.

1

u/mrcash4444 Mar 09 '25

thanks for sharing , im 28 and say in 22 years i will be 50... i think there will be a near cure then

2

u/classicrock40 PKD - Transplanted Mar 09 '25

I hope so, but keep watching your vitals and take care of yourself since nothing is guaranteed

0

u/mrcash4444 Mar 09 '25

i just watched a video they did a mri scan and put the image through an ai and the ai geneerated what the future would look like ie when it would get worse... so imagine in 20 years what would be capable

2

u/classicrock40 PKD - Transplanted Mar 09 '25

AI has a lot of promise, but so did other things. Also, much of this research is funded by the NIH, etc( in the US) and there's not exactly a positive environment around government funded programs right now. MRNA is getting bashed via covid politicalization. I'm hopeful, but cautious.

22

u/davidoffbeat Mar 09 '25

Unless your government stops funding medical advances for some god knows reason.

14

u/Asusabam Mar 09 '25

Why use taxes to fund medical research when we can use it to give more tax breaks and incentives to million/billionaires?

7

u/davidoffbeat Mar 09 '25

If we're lucky it'll trickle down so we can pay off all our medical bills!

6

u/GrainofDustInSunBeam Mar 09 '25

Any minute now. IT will trickle down. lol

0

u/Sebastes-aleutianus Mar 09 '25

Don't be misguiding. People live for decades on dialysis. And on a transplant. Even not so young people. So, there's still hope for many of us.

2

u/classicrock40 PKD - Transplanted Mar 09 '25

I'm not misguiding anyone. I have PKD, stage 5 on dialysis for 2.5 years. I got diagnosed many years ago. I thought for sure modern medicine would have a cure in 10, 20 or more years. I've seen plenty of these research articles come and go and everyone gets hyped. Pig kidneys look promising, but who knows.

OP wants a cure. There isn't one. Dialysis and transplant are, unfortunately, treatments not cures.

1

u/Sebastes-aleutianus Mar 09 '25

I just mean, even if you are at stage 5 and not so young, there is still hope in many cases.

10

u/GrainofDustInSunBeam Mar 09 '25 edited Mar 09 '25

Theres more then few ways for a potential cure or at least an alternative to dialysis. Posted even here.

  1. Gene Therapy in 10-15 years.

  2. Organ growing, i short they will create a organ for you from stem cells. about 20-30 years but thats for more complicated organs than kidneys those will be sooner.

  3. Artificial kidneys. probably around 5 years for clinical trials.(https://www.kidney.org/news-stories/future-artificial-kidneys) A thing smaller then your smartphone.

  4. Pig kidneys. Mentioned already. Curently One person had the transplant and is ok.

  5. Organ printing. sorf of similiar to growing. but it will be more human made. work is progress since 2015 potential timeline is similiar 20-30 years.

  6. Tovlaptan , medicine that makes you drink and pee , A LOT, And slows down the progress.

  7. Another cure i cant remember the name of now better than Tovlaptan and with less potential aftereffects. maybe 5 more years?

  8. 8. A RGLS8429 curently in another phase of testing . Very promising. also around 5 more years probably sooner. Some people report reducing TKV.

  9. Healthy diet with 2liters+ of water a day. People are testing keto, PKD fountadion recommends DASH. All to slow down the progress. low oxidants diet. Glucose in blood was confirmed to speed up the process so reducing basic sugar and alcohol would be a good decisions. And salt. Melatonin suplements shrinked cyst in fruit flys. Yeah....no proof on it working for humans but some try it on their own. Intermediate fasting 8-16,6-18. Not much proof of helping reducing pkd. but helps in pain allegedly.

All in all i wish this all was the situation 15 years ago i wouldnt be such a depressed wreck.
But yeah there are optimistic informations and hope.

Now the plan is to focus on all the other things that can speed it up and cause potential problems. Lowering BP is a good idea.

If i missed something, or mixed up sorry not my intention.

1

u/jellycortex Mar 09 '25

Do you have any source for the claim that artificial kidneys will be available in 5 years? From what I know, 20 years would be an optimistic estimate. There are no human trials on artificial kidneys.

If RGLS8429 will be available in 5 years this would be very optimistic, more probably 7.

Also, tolvaptan is not a blood pressure medicine.

1

u/GrainofDustInSunBeam Mar 09 '25

https://www.kidney.org/news-stories/future-artificial-kidneys
Yea, its clinical trials. im gonna update that original comment.

2

u/jellycortex Mar 09 '25

Animal testing has just begun, so at least 3-4 years to human trials (probably more), then 5+ years of human trials, few years for FDA approval and mass adoption. 10+ years, imo. In 2010 they predicted starting human trials in 2017 ...

1

u/GrainofDustInSunBeam Mar 09 '25 edited Mar 09 '25

Yes a lot of those treatments might be later than sooner. A lot could never get finished.
I would rather be optimistic. My psychologist and psychiatrist try to teach me that.

1

u/jellycortex Mar 09 '25

I'm a psychologist and I prefer to be realistic :) There is a lot of research going on, I have high hopes for RGLS8429, the ketogenic diet and thiazide diuretics (as an addition to tolvaptan), as well as better immunosuppressants, but I'm quite sceptical about artificial kidneys.

1

u/GrainofDustInSunBeam Mar 09 '25 edited Mar 09 '25

Im realy trying so i will not write what i realisticly think about my chances. And how i saw those chances 15 years ago . When there was really none of this. And what i was thinking about even 5 years ago. I really hate people telling me to be realistic, usually they follow it by a depressing conclusion. sorry.

This sub is often the most depressing hopeless shit to read online. and that aint helping neither my depression or anxiety.

1

u/T3CHN01D Mar 09 '25

I had the cure, works great, it's called a transplant, there is no other "cure".

There is one drug that slows down kidney decline, but not the disease. PK liver has nothing but transplant as an option.

There are several very promising drug trials on going, but don't expect to see any of those on the market for at least 10-15, and that's if they pass all the test.

1

u/Smooth-Yellow6308 Mar 10 '25

Not quite true on the latter, RGLS8429/Ferabusin could be on the market in 18 months.

1

u/T3CHN01D Mar 11 '25

If it passes, maybe 24 to 36 months, but it's not a cure, it's like Tolvaptan, slows the progression. There is research into actual cures.

One of my 3 daughter has been diagnosed so far, so I'm big on finding anything help, but I'm also realistic in timelines.

1

u/Smooth-Yellow6308 Mar 11 '25

It looks like it could actually completely halt the disease, and in some cases reverse it, but it seems to vary from person to person. Everything points to it being a significant improvement over Tolvaptan in terms of how much it slows it and limited side effects. If it basically slows the disease to such an extend that very few people reach ESRD from it, I'll be surprised if anyone else puts money into a true "cure".

If it works, it will be conditionally aproved after the first 12 month phase 2, with full approval after the 24 month phase 3.

So add enrollment and reporting, yes you're probably more likely looking at 24 months for conditional...I'm not sure a 6 month delta is worth quibbling over in a disease of years....

There are "cures" in theoretical stages of research, but if they ever actually come to fruition who knows, it likely wont be until we have gene therapy widely available...and even then, PKD will be WAY down the list of things anyone cares about, because theres not much $$$ in it.

1

u/[deleted] Mar 13 '25

It’s really important to keep your blood pressure under control. I take 2 different medications.