Can anyone explain why urso has no effect on Prognosis and why nor urso looks promising as a treatment in comparison? Thanks!
Here's an interview with Dr. Trauner regarding nor-urso and the theory for why it may work better than urso: http://www.pscpatientseurope.org/articles/english.html
Thanks, is it because the urso was leaving toxic bile inside the ducts that caused it to be ineffective? And the nor urso Is more water soluble to further detoxify the bile and also successfully circulate through the ducts and liver?
It does seem quite promising because of its added anti inflammatory properties. I also found this nor urso patent from 2008 a very detailed read on nor urso.
http://www.google.com.ar/patents/US20090163459
It’s hard knowing that a possible effective treatment is here yet we cannot get our hands on it.
A very good explanation is in this article: http://www.journal-of-hepatology.eu/article/S0168-8278%2815%2900133-6/fulltext
NorUrso is coming :-)
Can somone tell me why my lfts normalized on urso but didn’t touch PSC?
Hi there,
We have also asked around about Nor urso. We live in Canada, and have been told by 3 different gastro and liver specialists that it is too new to know much about long term effects of it, and is not available for patients, at least not here.Our son is a pediatric patient however, so maybe it is different than adults.
My understanding was that Nor urso doesn't just help reduce toxicity of bile, but seems to have the ability to lessen inflammation, which lessens the damage to the bile ducts in the liver, which might delay time to transplant, and maybe lessen the chance of other complications, like kidney problems, varices, etc.
My understanding of the urso itself is that it is used to keep liver "biochemistry" (the enzymes) in close to normal range, but has no real benefit as far as delaying the time to end-stage. Apparently it is actually more successful for treatment of PBC, where there is some proof that it does delay time to liver transplant.
My son is on urso, but it is in the low-mid range per day for dosage, and it is actually to help protect against colon cancer, which is a concern as he has ulcerative colitis as well. The lower liver enzymes are, in our case, just a beneficial side-effect.
MrTwissel -
The latest research (2 retrospective studies of previous Urso studies; 300+ patients) is starting to show that Urso does provide some benefit for a small part of the PSC population. If your LFTs are normal or within 1.5x normal through whatever means, you are much less likely to reach an endpoint (cancer, transplant, death) than someone with higher LFTs within the same span of time. These studies found that while approximately 30% in the non-urso group normalized LFTs, 40% normalized in the Urso group, suggesting that Urso provides a measurable benefit to approximately 10% of the PSC population. The rate of end points was lower in the Urso group out to 5 years, but converged with the non-Urso group from 10 years on, suggesting that the benefits of Urso diminish as the disease progresses.
If your LFTs are normal, either spontaneously or through Urso, you are in a good position. It doesn't mean the disease isn't progressing, but it does mean the odds are in your favor.
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Thanks jtb, the doc took me off urso and my enzymes are up a lot. would it be in my best interest to continue a low dose regimen?
Yes, assuming the Urso is getting your ALP down to within 1.5x normal. The following is a comment on the retrospective studies, but it also includes references to the studies themselves.
http://www.cghjournal.org/article/S1542-3565(13)00470-9/fulltext
Thank you so much for your input!
My doctor said no about continuing a low dose urso, he said that they don’t want the urso to mask my lfts.
Did you show him/her the article linked above? Bottom line, normal or close to normal ALP through whatever means (Urso included) equals improved prognosis. There are now at least three independent studies confirming this. I'd push back.
There is zero evidence that urso-assisted drop in alp improves survival. Urso trials did not have statistically significant difference in survival rates.
Aggregated, they did. From the two retrospective studies approximately 30% of the non-Urso users spontaneously normalized (normalized in one study; 1.5x normal or lower for the other) while 40% of the Urso group normalized. The Urso group had a lower rate of end points (higher survival) out to the 5 year mark. While these results aren't high powered by normal standards, the groups studied were the largest ever for PSC. From the link above: "There now appears to be a subgroup of patients with PSC who, like primary biliary cirrhosis, achieve a biochemical response to UDCA that translates into a significantly more favorable prognosis."