Nor-Urso: Hi All, I wonder if anyone here... - PBC Foundation

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Nor-Urso

Betonarme profile image
21 Replies

Hi All,

I wonder if anyone here took or taking part in a NorUrso trial?

Thanks!

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Betonarme profile image
Betonarme
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21 Replies
gwillistexas profile image
gwillistexas

No. Was the outcome good?

gwillistexas profile image
gwillistexas

I just read a bit on this. Seems clinical trials have been going since 2012? From what I read, this might hold promise of a possible cure? That would be s blessing for all.

i read this trial was for PSC... can't find any indication that a trial is being done for PBC.. or any comment that it would help those with PBC, if you have a link could you post it for those of us that like to follow the reasearch.

gwillistexas profile image
gwillistexas in reply to

Search “not-Urso”. There are several links, one is clinical trials.

gwillistexas profile image
gwillistexas in reply to

Sorry, meant “nor “

in reply togwillistexas

Thank you, I will try again.

gwillistexas profile image
gwillistexas in reply to

Schlerosing. Liver foundation describes same as PBC

in reply togwillistexas

pscsupport.org.uk/sites/def...

Hope the link works it shows the difference between the two conditions

gwillistexas profile image
gwillistexas in reply to

It also speaks of bile ducts

gwillistexas profile image
gwillistexas in reply to

Seems they call it primary sclerosing cholangitis

in reply togwillistexas

PSC .. primary sclerosing cholangitis. Is a different disease from PBC.. that's why I don't think they would recruit patients with PBC onto that particular trial.

LisaC22 profile image
LisaC22 in reply togwillistexas

Hi. They’re two different diseases.

gwillistexas profile image
gwillistexas in reply toLisaC22

May be in one sense, mostly affects men but if you read primary schlerosis cholangitis symptoms & inflammation in bile ducts causing cirrhosis eventually, to me it’s basically the same.

in reply togwillistexas

While both conditions can eventually lead to cirrhosis they are very different in their treatment and progression.

The Etiology of PBC: "begins with loss of immune self tolerance, leading to damage of the biliary epithelial cells of small bile ducts. Ongoing immunologic events perpetuate the biliary epithelial cell destruction via direct cytotoxicity or lymphokine-mediated cell damage, leading to disease progression." whereas with PSC the "destruction of the intrahepatic and extrahepatic bile ducts.... leads to multiple areas of stricturing in the biliary tree and eventually to cirrhosis." cited at:

clevelandclinicmeded.com/me...

From my reading of this article it appears that there is no real treatment for PSC other than treating the symptoms/complications (which as would be expected, being a liver disease, are similar to PBC) - UDCA (Urso) was trialled, but at the time of the study showed "no beneficial effect on survival."

gwillistexas profile image
gwillistexas in reply to

Thanks! I’m big on Cleveland Clinic & Mayo as well. I’ll read the link. 😊

Betonarme profile image
Betonarme

Hi Folks,

Results of the Phase 2 trial are quite promising for PSC patients and I believe Nor-Urso also will be very beneficial for PBC patients. See the Links below. I thought I saw somewhere that Nor-Urso was also in Trial with PBC patients but I could not found the Text anymore....that is why I thought I would ask the Forum :)

Initial successes in treating a hitherto incurable liver disorder: medicalxpress.com/news/2017...

EASL - promising trial results presented: pscsupport.org.uk/news/easl...

24-norursodeoxycholic acid improves ALP in primary sclerosing cholangitis: healio.com/hepatology/autoi...

2bear profile image
2bear

hi can someone tell me exactly what Nor urso is? thanx..

Sachin1234 profile image
Sachin1234

Nor-urso is same formula as urso except it is water soluble..water soluble is more potent then fat soluble.. if it passed or succeed the clinical phase then it will be the desire medical medics for all liver and bile duct related disease..

positive benefits of nor-urso so far

in clinical phase :

Easy to soluble in water so circulate well in liver and flush way better than urso.

Also help stimulate bicarbonate secretion which help protecting bile duct epithelial cells from other toxic acid

It decreases jaundice, fibrosis and inflammation attack in liver.

Looks helpful in pruritus also

Future study needed for fatigue and already cirrhosis liver !

Conclusion 2nd phase done in 2015 it was looking convening and new breakthrough for liver disease

I'm trying to find new article what they are doing or what is the outcome after 2nd phase 🙏🙏🙏❤️

gwillistexas profile image
gwillistexas in reply toSachin1234

All I found was results of phase 2 study, they were expected in 2015 but couldn’t find anything further. If I remember correctly, they were hoping for a Stage 3 clinical trial? ( don’t hold me to that...just having 1st cup😀)

Sachin1234 profile image
Sachin1234 in reply togwillistexas

Yes, there is no article or anything after 2015! May be psc people in Germany and Netherland know better about this trial!

gwillistexas profile image
gwillistexas in reply toSachin1234

Sounds like pbcers could benefit as well. After all, our bile ducts are at great risk just like those with psc. Will pray they continue with research on pbc & find promising treatment for us.

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