Just a little info about ursodiol

[Jen11804]

I found this article to be interesting. gastrojournal.org/article/S...

My niece gave me this link to read. It’s a little outdated so not sure how accurate it is.

[Jen11804]

Apparently there is an animal bile you can take to replace ursodiol.

I’m waiting to get more info.

[Hidden in reply to Jen11804]

Ursine is a synthetic bear bile - the original drug was extracted from live bears.... I’ll leave that with you

[Hidden in reply to Jen11804]

Predictive text... urso

[Hidden]

I read the study. It is 15 years old, studied 262 patients, and concludes that URSO, when taken as early intervention, gave same life expectancy as non-PBC people. There is nothing in it that suggests anything else as far as I can tell.

Did I miss something? I'm not qualified to evaluate the study or interpret anything from it. But that doesn't worry me. I have been reliably told from huge research of ursodiol benefits.

I had cancer. I have no more idea why I had that than why I have PBC. No one else does either. All I know is, I'll take URSO and be very glad of it.

I am really sorry that your niece has unsettled you with her presentation. She may be very young and have no knowledge of the ethics of promoting her theories to you who have your own established way of managing a difficult and rare condition that can leave anyone second guessing themselves to their possible harm. Best wishes

[Jen11804 in reply to Hidden]

That’s why I put this information on here wondering if anyone had heard anything similar or anything bad about urso. I did tell her I found nothing and if it wasn’t for urso I don’t know how my enzymes would have lowered and for me to feel as good as I feel.

I just wanted a little feed back about it instead everyone seems like they are taking offence to this. I thought this forum was for getting information and helping people not criticizing them

[Hidden in reply to Jen11804]

Don't be upset - I don't think people are taking offence at you and what you have posted. It is helpful in a way that you posted this because it flags up the ever present reality that there'll always be another angle and we always need to practice spotting the difference between reliably sourced info and the other kind. People are passionate about this stuff - no wonder - all of our lives depend on it, yours too, and we don't want anyone's googlings to harm anyone, you included? Be strong!

[Jen11804 in reply to Hidden]

Of course. Just put it on here like I said for questions and information in case anyone has heard anything.

Just trying to stay informed. 😊

[Hidden in reply to Jen11804]

I must admit I was offended not gonna lie... mainly by the fact that your relative only found one article in her googling that she felt necessary to relay to you - which was a negative one and her promotion of natural -whatever that is- medicine !! As I say bear bile the original urso is natural but there’s no way any of us would take that, without the development of a synthetic drug, we would all be in a worse position..

Maybe direct your niece to this forum where she can see the amount of research and content that already exists amongst the obvious community

I wish you well and don’t feel too bad, you were just the messenger!!

[HealthyChik]

Hi,

I know when I was diagnosed with PBC a few months ago, I had a lot of input/opinions from my close friends and family. Several are healthcare professional and others weren't, but I truly believe they all had my best interest at heart. However, I have come to realize that when you have a rare condition, you are better off doing your own reading/research to ensure you are getting credible up to date information. While the study you posted is old, it definitely contains positive results. What I gathered was that they basically compared 2 models that predict the course of PBC when taking Urso. They looked at patients with early disease and more advanced disease. While there were some differences in the outcomes between the models, my takeaway was that patients who take Urso, especially ones caught at an early stage, have a normal life expectancy. I think this is the case with many diseases that are caught early and treated if compared to patients who started treatment at a more advanced disease stage. Sometimes research is just documenting common sense. And it takes many replicated studies with the same outcome to cause organizations to change position on a current treatment and I haven't seen anything indicating that Urso causes cancer. I hope you can weigh all the information as well as the advice from your healthcare team to make an informed decision, as each and every one of us has a different journey with this disease. Just my thoughts! Wishing you the best. 💕😊

[Jen11804 in reply to HealthyChik]

Thanks for kind words. I will definitely research and will continue to take urso.

Best wishes to u 😊

[Hidden]

It’s an old study. There are more up to date studies. I surf here there and everywhere but can never find links when I want them. Important doseage linked to body weight. Mayo website helpful and someone at Newcastle university doing lots of research on PBC. Only about 70% respond to Urso but alternative available. Also takes a year to find out if you’re one of the 70%. A good consultant should ensure your trust and they should know what they’re talking about but always good to do your own research and listen to others with the illness.

[Jen11804 in reply to Hidden]

After researching myself and not finding anything I won’t be stopping urso. I really had no intentions of it unless I found something that linked cancer to the medication.

My niece hasn’t gotten back to me so I’m thinking it was a very small outdated article. I’m not worried about taking urso and didn’t want to start a controversy over mentioning and asking if anyone had heard this before.