KPV use in Crohn's disease

[RoundMan]

My daughter is dealing with Crohn's, and the main issue is inflammation within her intestines.

She's interested in giving KPV a try, but she's trying to find a cycle protocol.

Dosing itself isn't a problem for her to grasp, but what we're stuck on is finding a solid guide for how long a cycle should run, or whether you need to take breaks at all.

I came across a single post mentioning 8-12 weeks, yet it doesn't explain how long the off period should be.

Does anyone have suggestions?

 

[lessthanhalf]

I have ulcerative colitis, which is why I went digging into KPV. For colitis there is a large body of cell, rat and mouse research, but human trials are absent — meaning any cycle or protocol circulating online was invented by someone, not derived from data. Colitis is comparatively simple to model in mice, whereas Crohn's is far more complicated and creating a mouse or rat model for drug testing is considerably harder. In mouse colitis models, oral KPV does show solid evidence of benefit, yet there is no genuine proof that it reaches far into the human gut — and certainly not the colon — when swallowed. (The mouse GI tract is far shorter than a human one.) That is why newer work focuses on encapsulating it or attaching it to another molecule, so it survives longer and actually arrives where it is needed, chiefly the colon.

Injection could conceivably do something, but animal studies using that route are scarce and human ones do not exist, so guidance is minimal. Because it is a peptide the body produces on its own, that offers a slight safety signal, though it does not establish that big injected doses are harmless. As I understand it, KPV is released in the gut as an antimicrobial peptide, likely to assist in managing microbiome bacteria.

 

[RoundMan]

Yeah, the amount used is tiny, and from what I've gathered, you more or less adjust gradually until you land on what works for that person.

A handful of Crohn's communities I've come across have members who take it, and they appear to be doing well.

The sole rationale I can think of for taking breaks is so you don't build up a tolerance to it.

I'll put the question to the Crohn's groups as well.

 

[jordekorn]

I've come across information saying it can reduce inflammation tied to crohns, colitis, and eczema. My colon was taken out back in 2007, so ulcerative colitis is no longer an issue for me, but my immune responses run pretty active and higher than they should, and at menopause I ended up with really awful eczema — kpv hasn't done a thing for that.

Like the earlier suggestion said, get into a crohns group, that sounds promising!

 

[wonttellyou]

CU is what I have, and I do use it. It keeps me from bleeding out of my anus.

Twice a week I take 10 units, drawn from 10 mg / 3 ml --> and that is enough to live a fairly normal life with the illness.

 

[px1984]

lessthanhalf said:

I have ulcerative colitis, which is why I went digging into KPV. For colitis there is a large body of cell, rat and mouse research, but human trials are absent — meaning any cycle or protocol circulating online was invented by someone, not derived from data. Colitis is comparatively simple to model in mice, whereas Crohn's is far more complicated and creating a mouse or rat model for drug testing is considerably harder. In mouse colitis models, oral KPV does show solid evidence of benefit, yet there is no genuine proof that it reaches far into the human gut — and certainly not the colon — when swallowed. (The mouse GI tract is far shorter than a human one.) That is why newer work focuses on encapsulating it or attaching it to another molecule, so it survives longer and actually arrives where it is needed, chiefly the colon.

Injection could conceivably do something, but animal studies using that route are scarce and human ones do not exist, so guidance is minimal. Because it is a peptide the body produces on its own, that offers a slight safety signal, though it does not establish that big injected doses are harmless. As I understand it, KPV is released in the gut as an antimicrobial peptide, likely to assist in managing microbiome bacteria.

I'm trying to find things that might help my UC too — how far did your KPV research get?

 

[RoundMan]

jordekorn said:

I've come across information saying it can reduce inflammation tied to crohns, colitis, and eczema. My colon was taken out back in 2007, so ulcerative colitis is no longer an issue for me, but my immune responses run pretty active and higher than they should, and at menopause I ended up with really awful eczema — kpv hasn't done a thing for that.

Like the earlier suggestion said, get into a crohns group, that sounds promising!

Would you be okay with me asking whether you have an ileostomy?

 

[Sir Chuck]

wonttellyou said:

CU is what I have, and I do use it. It keeps me from bleeding out of my anus.

Twice a week I take 10 units, drawn from 10 mg / 3 ml --> and that is enough to live a fairly normal life with the illness.

That's definitely a victory!

 

[jordekorn]

RoundMan said:

jordekorn said:

I've come across information saying it can reduce inflammation tied to crohns, colitis, and eczema. My colon was taken out back in 2007, so ulcerative colitis is no longer an issue for me, but my immune responses run pretty active and higher than they should, and at menopause I ended up with really awful eczema — kpv hasn't done a thing for that.

Like the earlier suggestion said, get into a crohns group, that sounds promising!

Would you be okay with me asking whether you have an ileostomy?

Yes, I do. It's been close to 20 years for me. When it came time to decide, I chose the bag rather than having the small intestine hooked back up to my bootyhole. I'd dealt with uc for the majority of my life, so going back to pooping the "normal" way wasn't something I cared about. What did worry me was the chance of not having enough bowel control, given all that liquid always coming out. Getting rid of that thing was the single best choice I've ever made. I wish I'd done it at 18 rather than 34.

 

[jordekorn]

px1984 said:

lessthanhalf said:

I have ulcerative colitis, which is why I went digging into KPV. For colitis there is a large body of cell, rat and mouse research, but human trials are absent — meaning any cycle or protocol circulating online was invented by someone, not derived from data. Colitis is comparatively simple to model in mice, whereas Crohn's is far more complicated and creating a mouse or rat model for drug testing is considerably harder. In mouse colitis models, oral KPV does show solid evidence of benefit, yet there is no genuine proof that it reaches far into the human gut — and certainly not the colon — when swallowed. (The mouse GI tract is far shorter than a human one.) That is why newer work focuses on encapsulating it or attaching it to another molecule, so it survives longer and actually arrives where it is needed, chiefly the colon.

Injection could conceivably do something, but animal studies using that route are scarce and human ones do not exist, so guidance is minimal. Because it is a peptide the body produces on its own, that offers a slight safety signal, though it does not establish that big injected doses are harmless. As I understand it, KPV is released in the gut as an antimicrobial peptide, likely to assist in managing microbiome bacteria.

I'm trying to find things that might help my UC too — how far did your KPV research get?

before my colon was removed, I'd signed up for a study at ucsf, but it wasn't making any progress. my uc didn't respond well to most treatments. remicade was the final “experimental” option I tried, and it did help, though it stopped working after a while. kpv wasn't available then. it's been roughly 20 years since I've had a colon. at the time, my dr brought up pin worms and the paste food astronauts eat, if I remember right. but the trips to San Francisco for treatment turned into more stress than they were worth: a 5 hour drive each way, all while flaring, and I was flaring nonstop.

(I never got the chance to try kpv for UC)

 

[lessthanhalf]

jordekorn said:

px1984 said:

lessthanhalf said:

I have ulcerative colitis, which is why I went digging into KPV. For colitis there is a large body of cell, rat and mouse research, but human trials are absent — meaning any cycle or protocol circulating online was invented by someone, not derived from data. Colitis is comparatively simple to model in mice, whereas Crohn's is far more complicated and creating a mouse or rat model for drug testing is considerably harder. In mouse colitis models, oral KPV does show solid evidence of benefit, yet there is no genuine proof that it reaches far into the human gut — and certainly not the colon — when swallowed. (The mouse GI tract is far shorter than a human one.) That is why newer work focuses on encapsulating it or attaching it to another molecule, so it survives longer and actually arrives where it is needed, chiefly the colon.

Injection could conceivably do something, but animal studies using that route are scarce and human ones do not exist, so guidance is minimal. Because it is a peptide the body produces on its own, that offers a slight safety signal, though it does not establish that big injected doses are harmless. As I understand it, KPV is released in the gut as an antimicrobial peptide, likely to assist in managing microbiome bacteria.

I'm trying to find things that might help my UC too — how far did your KPV research get?

before my colon was removed, I'd signed up for a study at ucsf, but it wasn't making any progress. my uc didn't respond well to most treatments. remicade was the final “experimental” option I tried, and it did help, though it stopped working after a while. kpv wasn't available then. it's been roughly 20 years since I've had a colon. at the time, my dr brought up pin worms and the paste food astronauts eat, if I remember right. but the trips to San Francisco for treatment turned into more stress than they were worth: a 5 hour drive each way, all while flaring, and I was flaring nonstop.

(I never got the chance to try kpv for UC)

Those attachments don't give an accurate picture of what the science on KPV actually shows. They're AI generated, and they appear to fall into the usual traps — prioritising a tidy narrative over getting the facts right, and failing to separate real human clinical trials from animal or cell work. The clinics listed on page 1 are wellness businesses built to squeeze as much money as possible out of people, whether or not what they offer actually works.

To my knowledge, no human studies have looked at KPV as a treatment for inflammatory bowel disease, which means it is by definition unproven for safety or effectiveness in humans. For each drug or drug like molecule that does eventually pan out as a human treatment, there may be 20 or 50 times as many molecules backed by interesting or promising sounding preclinical research — and that is precisely where KPV sits right now.

 

[RoundMan]

jordekorn said:

RoundMan said:

jordekorn said:

I've come across information saying it can reduce inflammation tied to crohns, colitis, and eczema. My colon was taken out back in 2007, so ulcerative colitis is no longer an issue for me, but my immune responses run pretty active and higher than they should, and at menopause I ended up with really awful eczema — kpv hasn't done a thing for that.

Like the earlier suggestion said, get into a crohns group, that sounds promising!

Would you be okay with me asking whether you have an ileostomy?

Yes, I do. It's been close to 20 years for me. When it came time to decide, I chose the bag rather than having the small intestine hooked back up to my bootyhole. I'd dealt with uc for the majority of my life, so going back to pooping the "normal" way wasn't something I cared about. What did worry me was the chance of not having enough bowel control, given all that liquid always coming out. Getting rid of that thing was the single best choice I've ever made. I wish I'd done it at 18 rather than 34.

Around that same period, my wife also had one.

According to her, it was the greatest decision she ever made. Even though UC is no longer an issue for her, she continues to deal with plenty of other connected problems.

I've been wondering whether kpv might help her, but I haven't come across anything indicating it would be safe with an ileostomy.

 

[jordekorn]

RoundMan said:

jordekorn said:

RoundMan said:

jordekorn said:

I've come across information saying it can reduce inflammation tied to crohns, colitis, and eczema. My colon was taken out back in 2007, so ulcerative colitis is no longer an issue for me, but my immune responses run pretty active and higher than they should, and at menopause I ended up with really awful eczema — kpv hasn't done a thing for that.

Like the earlier suggestion said, get into a crohns group, that sounds promising!

Would you be okay with me asking whether you have an ileostomy?

Yes, I do. It's been close to 20 years for me. When it came time to decide, I chose the bag rather than having the small intestine hooked back up to my bootyhole. I'd dealt with uc for the majority of my life, so going back to pooping the "normal" way wasn't something I cared about. What did worry me was the chance of not having enough bowel control, given all that liquid always coming out. Getting rid of that thing was the single best choice I've ever made. I wish I'd done it at 18 rather than 34.

Around that same period, my wife also had one.

According to her, it was the greatest decision she ever made. Even though UC is no longer an issue for her, she continues to deal with plenty of other connected problems.

I've been wondering whether kpv might help her, but I haven't come across anything indicating it would be safe with an ileostomy.

What kind of problems is she dealing with?

For me, trizepatide is easily the top peptide when it comes to having an iliostomy. It makes the stomach empty more slowly, which makes bag changes easier and stops me from being woken up all night to burp or rinse it. It also helps with inflammation caused by all the uc meds we had to take back in the 90s. My joints feel like they used to.

As for kpv, it hasn't done anything for the menopausal skin inflammation that showed up over the last few years, though I'm also taking Dupixant. I've just got this crazy inflammation response in my skin now; no dr has connected it to menopause, but no dr has really investigated it either. The way I see it, puberty handed me ulcerative colitis and menopause handed me eczema. (Glad I never had kids, who knows what that hormone shift would have set off.)

So basically, if there's something she's worried about and I've dealt with the same thing, I'm glad to share what I've been through.

 

[Skinnylegend95]

px1984 said:

lessthanhalf said:

I have ulcerative colitis, which is why I went digging into KPV. For colitis there is a large body of cell, rat and mouse research, but human trials are absent — meaning any cycle or protocol circulating online was invented by someone, not derived from data. Colitis is comparatively simple to model in mice, whereas Crohn's is far more complicated and creating a mouse or rat model for drug testing is considerably harder. In mouse colitis models, oral KPV does show solid evidence of benefit, yet there is no genuine proof that it reaches far into the human gut — and certainly not the colon — when swallowed. (The mouse GI tract is far shorter than a human one.) That is why newer work focuses on encapsulating it or attaching it to another molecule, so it survives longer and actually arrives where it is needed, chiefly the colon.

Injection could conceivably do something, but animal studies using that route are scarce and human ones do not exist, so guidance is minimal. Because it is a peptide the body produces on its own, that offers a slight safety signal, though it does not establish that big injected doses are harmless. As I understand it, KPV is released in the gut as an antimicrobial peptide, likely to assist in managing microbiome bacteria.

I'm trying to find things that might help my UC too — how far did your KPV research get?

I have uc as well, and entyvio has basically done wonders in my case—zero flare ups over the past 2 years. Even so, I'm still interested in giving kpv a try too.