Urso

[WendyMarie]

I read an article on the National Liver Foundation website, written by a Dr. that said, although URSO is widely prescribed all over the world for PBC, the effects of URSO in determining a patient's prognosis is controversial. Does anyone have any information about this?

[boneytoys]

Its an expensive drug by all accounts that usually normalises and maitains your liver readings and results. Its also has extremely low toxidity and sode effects.

Im happy to take it...more than...

[Hidden in reply to boneytoys]

Not sure where you are boneytoys, urso is an expensive drug but I have to say now that 'it was'.

I was prescribed brand name URDOX in Dec 2010 when I was diagnosed with PBC but Sept 2012 I collected the prescription and never noticed the word URDOX had gone from the packaging and tablet foil and it is now just ursodeoxycholic acid.

I would prob not have noticed but within a mth of starting this new batch of urso I started to feel as I did when I first started on urso (heartburn and a bit bloated). It was then I checked the packaging and noticed they are not branded now.

I checked with the chemist who said URDOX was no longer on the NHS List and also when I saw the GP Oct. He checked his listings and said URDOX was no longer on there, he had to prescribe 'ursodeoxycholic acid' the generic name.

I have since settled down again but think that altho' the urso I have is the same company making the drug, it is being sold cheaper now to the NHS. So technically it is costing the NHS a lot less to prescribe now than it originally was. I know when I first got it I did ask for more than 30 days supply and managed to negotiate to 90 days which I still get. My argument then was that I have to pay for my scripts, always have so shouldn't have to warrant keep on going every mth for a new script. The GP then informed me how much the packs were costing but I couldn't have cared less to be honest as over the yrs I've hardly had an scripts, always have had to pay for them so tough.

[SC49]

in all the reading that I have done, I think I have only seen one article that suggests anything negative for Urso. As far as I can recall, it said that where it is prescribed early in the illness, they can't be sure that it has a significant impact on the rate of progression of PBC

Everything else that I have read suggests that it does slow the progress of PBC significantly. I think because it is an uncommon condition, and because Urso is a relatively recent treatment, it is more difficult to get definitive 'proof' of the effect.

I am more than happy to be taking Urso because the information that I have read and the levels of evidence are enough for me to think that I will get more benefit from taking it than from not taking it. At worst, it will do me no harm

[WendyMarie]

Of course, I agree with you! Something is better than nothing to take. Thank you so much for your reply.

[Hidden]

I read also a few years ago that urso was controversial (in fact I have read it again on another site, think it was the Queen Elizabeth hospital newsletter that time from the Liver Unit).

It isn't quite understood how it works for people with PBC as it was originally marketed for patients with cholesterol gallstones. Given PBC patients can test for higher levels of cholesterol altho' there are diff cholesterols and it is thought it is the good one and not the bad one, urso can aid in the breakdown of fats as it adds more bile to the system, bile that is thought to be a bit lacking due to the bile ducts being destroyed (hence the liver gets irritated with bile flowing into it).

Urso has been found to aid the blood results and tho' it's not an 100% cure for PBC at the end of the day as WendyMarie states, it is far better feeling that something could be working as opposed to just 'sitting it out' if one is finding that they are handling the urso well.

[WendyMarie in reply to Hidden]

Thank you for your reply. I have not started URSO as of yet, so when I do (after the biopsy Jan. 8) I just hope it helps.

[nannan]

This one would be a good one for Robert from PBC to answer.

[WendyMarie in reply to nannan]

Is Robert the moderator of this site? If so, how do we send a question to him?

[Hidden]

I've seen 'PBC Robert's' postings on this site. Assume you can check if you click on the directory to find him. You could then message him that way.

Robert is apparently Collette Thain's son as I have read in one of the PBC newsletters.

[Juamcc]

In USA my prescription for ursodiol 5 times higher than last year! My medicare pays the other cost I will be in the Medicare donut hole by the 1st of June then I'll have to pay all my expenses. If there is any chance that urso diol doesn't work or if there is a cheaper form I would be most grateful! Any advice would be gratefully received.