Is this disappointing information?

[butterflyEi]

healio.com/hepatology/autoi...

Has anyone read this article?  Would like to know what you think.

[Hidden]

Hello butterflyEi.

I only read certain sites.  I find a lot of websites can give false information.

I am in the UK and trust certain sites.

I also find that certain sites via links on this and others often get blocked by my pc security so it often makes me more wary.

[cclcnal7]

I haven't been prescribed anything yet as not at hospital till May. My GP won't give me anything because he says that's up to the consultant. Does urso help? There is no cure so is there any point in taking it? Not saying I won't, don't get me wrong but I already take quite a bit of medication for other things and am quite frankly fed up of relying on pills.

[butterflyEi in reply to cclcnal7]

Hi cclcnal7

I hope the consultant can give you an answer to this vexing question.

I also do not like taking all these tablets.

[Hidden]

I just read this article and wonder how reliable the findings are to me it seems to lack information. For example how long were the trials run for, what  spacific criteria was needed to be part of the trials.  All of which could influence the the outcome. I am happy to go with my doctors on taking it, I was informed  it slowed the progression of the disease if you responded to it. 

Perhaps someone from the  Pbc foundation may know more about this trial and its reliability. 

[gmo3352]

Hi butterflyEi

I wondered about this article also. But I am beginning to believe there is no one general cure or answer for any disease. Every body has its own unique chemical responses to meds. The fact that so many of us have seen dramatic changes in our LFT tests, particularly in the AP readings, must mean Urso does have a positive effect. Longevity is such a tough issue, who knows whether a lifetime becomes longer or shorter because of one drug for one disease. The study didn't account for PBCers with additional health concerns, taking additional drugs, or starting Urso after a diagnosis in stage 1 or 4. I guess I am trying to say that I while I think we owe it to ourselves to question and to seek the best treatment, I also have found peace in following your, and liver bird and peridots dear advice to, in sum, live the day. Some days it's just hard to do so. Thank you for your posts. I always enjoy new info!

[chynablue]

This article means nothing.  

They took a bunch of studies that were already conducted, compiled the data all together, and found nothing.  The studies included had different populations, methods, and results.  The only thing they have in common is that they included Urso medication in the study.  It appears that they searched a data base using "UDCA" as the keyword, exported it to excel, and ran a statistical analysis.

I noted that this was presented at a conference sponsored by Chochrane, a company that specializes in "gathering and summarizing" information from research.  So, that sounds about right.  Unfortunately, more judgement should have been exercised in determining what information should have been included.

The only thing they really conclude from this "study" is that Urso had no significant increase or decrease in "all cause mortality".  All cause mortality means dying for any reason - liver failure, heart disease, being hit by a car, toaster in the bathtub - any death at all.

A better study would be to eliminate people who died of non-liver related causes.  Otherwise, they are basically saying that Urso will not save you from falling off a cliff.  Well, duh.

The entire article talks about how Urso has no effect, but then at the very end, we get once sentence that says "there was evidence UDCA use improved bilirubin and plasma alkaline phosphatase", which is what Urso is used for.  Because 90% of the article is about how Urso doesn't work and only 10% is about how it does work, I would say that the article shows an embarrassing amount of bias.  The fact that the title is misleading is the icing on the cake.  Shame on everyone involved.

[butterflyEi in reply to chynablue]

thank you for your clarity Chynablue.  I do not like articles which can be unsettling it makes me question known truths.

[Belliver]

I just read this post--- I'm taking a copy of this to my next appt with liver dr, see what he says, let you know.  For myself, my blood results became almost normal while on urso; sometimes when blood work stayed elevated (fluctuations) dr would increase dosage, things would normalize. He explained that urso behaved much like a quality oil in an engine--- helps things run more smoothly. I would not let this poorly written article dissuade me from taking urso.