Hi all. I'm newly diagnosed with PBC and have had symptoms for roughly 10 years, not realizing what was wrong.
I am so tired, nauseated and very itchy all the time; especially my feet and hands. I had the fibrosis test done and get my results next week.
Im not on any medications yet but curious to know what this Urso is?
BTW, the stomach pain can be unbearable .
Hi Nanabanana1, I’ve recently been diagnosed in Feb of PBC too. I too had blood indicators since 2010 but the fantastic medical professionals didn’t bother to tell me. I was putting most of my symptoms down to menopause.
I’ve recently been taken off Urso as a 2 week break as my symptoms of itch and stomach pains and upset all kicked in when I first started taking it. I’m convinced Urso is to blame as I felt better recently without it. I’ve only been back on it 3 days and am back to feeling dreadful.
Not everyone is a positive responder to Urso, I think that’s me.
I hope you manage to take it better and are a positive responder to it if you are prescribed it.
This site is great, if you have any questions or queries don’t be afraid to ask, and welcome to the site 😃. Jane xx
I have been taking URSO since 2006 and have fortunately not suffered with any problem other than tummy issues when first taking it. It is suggested that when you first start taking it that is is spread through the day until your body has a chance to become used to it, for me I find it best taken with food otherwise it can have a habit of coming back at you. If you do not respond to URSO which helps drain bile from the liver there are now a couple of things some specialist will try. Ocaliva which is a fairly new drug is licensed in some countries including the USA and UK and some people with PBC post that they have been prescribed medication from the fibrates group such a fenobrate or bezafibrate.
Do you think the stomach pain would be improved by taking an antacid or is it a different sort of pain? Best run that past the specialist as they know your case best.
hope some of this helps, best wishes
I was diagnosed last October and been on Urso since then. I noticed an improvement quite quickly and fortunately haven't had side affects. I still have periods of extreme tiredness which I haven't managed to work out the reason behind but that tends to be the main symptom. I also have sjorgrens which is often common with PBC.
Urso has been very effective in lowering LFTs and also given a positive result on fibroscan so it can be really effective.
When do see your consultant for a follow up? Have you tried altering when you take Urso? I take it in 2 doses morning & evening with food.
Which hospital are you at?
Ursodeoxycholic Acid = URSO. Is the first line medication for PBC. How much you take depends on your weight, like others have said, take this with food.
There are also additional medications that you can get for the itch . I’am sure your doctors will discuss these treatments with you at your appointment next week, if not perhaps you should mention it to them.
Lots of people mention stomach pain in the upper right quadrant, I also get this at times but it’s worth having this addressed with the doctors to make sure it’s not something other than PBC. I also had IBS and gall stones and felt so much better once that was sorted out.
Have you joined the PBC foundation, the details are on the home page. They have lots of very good information on PBC that may help you understand more about the condition. Take care
First group pbc meeting, london
Found a US PBC Support Group 
Once group
New to this
New Diagnosis, Depressed
