Hello to you all. Another new PBCer
Some of you have had PBC for a long time (surprised).
Has taking urso brought liver counts to a normal level I should say down or are your counts stayed the same?
I'm not sure how long one should give, in terms of life expectancy, and how much urso helps in prolonging.
Probably not explained what I'd like to know - so bear with me...
I'm still being diagnosed, but from what I"ve heard on here and read, that if you are caught before cirrhosis is started and you respond to URSO, you're life expectancy is pretty much the same as someone who doesn't have this disease. Its all variable on some people. Some progress faster than others, some don't progress at all. My mom was diagnosed in 1995 and went on urso right away. I believe she was in stage 2 (can't recall) and pretty much stayed there, even improving the condition of her liver at the time. She died in 2009, but not of PBC. Her liver was still in the same stage when she died and was one of the few things that still worked ok in her body.
I am still waiting to be diagnosed, but that is what I have gleaned. THings are far different than they used to be. NOw with URSO forte, which is specifically for PBC, I hear the results are even better. I think I will be joining the club soon (or already have, just haven't gotten the final word yet)
Hi NotorDJP just wondering what is this URSO forte? I was diagnosed with PBC only last month and started on URSO as my ALP is raised. My specialist said that most people are URSO responsive but for those who aren't there's a "super URSO" which is not Yet licenced for use. I am a nurse and I swear we make the worst patients cos I wanna know everything about everything!!
I think urso forte is that pill. I dont know if its approved or not but i read it on a mayo clinic site. I am in the us so not sure if its approved here or not. I think urso forte was designed exclusively for pbc. But thats all i know. Just google it. Not sure though
Hi Mumoftwo and welcome ! I knew when I read your post that you were a nurse ! I am too and there is another lovely lady on here who I recognised as a nurse as well - I think we all speak the same language regardless of where we live. Regarding your query above : I was diagnosed 10 years ago at age 38 when the youngest of my 4 children was 5. Staged at 1-2 via liver biopsy ( common here in Australia ) and responded initially to Urso although LFTS never completely normalised. 7 years passed and I almost forgot I had PBC until 3 years ago when LFTS deteriorated significantly for no particular reason. Fatigue had been worse but no other symptoms. After many scans - MRI, US, Fibroscan , saw a Renal Specialist, repeat blood tests and then another liver biopsy, PBC had progressed to stage 3. My consultant says I have fallen into a minority who no longer respond to Urso( although I still take it ) and consequently recruited me into the Obeticholic Acid trial which has shown promising results in small trials. Yet to discover whether it has had a positive effect on me as I took it all through 2013 with LFTS worse if anything so Dr feels I was in placebo arm ( double blinded until later this year ). Now taking 5mg. I have only ever heard of it as OCA though so not sure about Urso forte ??
I recommend reading the many posts and questions when you have a moment. Every single PBC story is unique with everyone's journey taking differing paths. I wish you all the very best Mumoftwo.
Cheers from Downunder,
Karaliz
Urso Forte is just a generic brandname for Ursodeoxycholic Acid. Depending upon the Manufacturer, the names are different for the same drug. The one I take is called Ursofalk, for example. There is a full list of brand names on this website : drugbank.ca/drugs/DB01586. My Daughter explained this to me when I got a bit excited at the possibility of a new "Super Urso". (She is a Biomedical Scientist).
Grrrrr, link doesn't work!!!! Google drugbank and search Usodeoxycholic Acid, you should find it 
I wa diagnosed around thirteen years ago with PBC. I was quite frightened at first and wondered what my life expectancy was. I do not take Urso and have never been offered it. I do not have too many symptoms as yet that many other sufferers have talked about. There are foods I don't tolerate now, but apart from a swollen abdomen (worse some days than others). There are no obvious signs really. I think the progression varies from person to person. One lady on this site said we can die with it rather than from it. I have systemic scleroderma and the symptoms manifesting from this rather puts my PBC in the shade.
Take good care and do not worry unduly.
This made me cross. If you are diagnosed with early stage PBC you should be on Ursodeoxycholic Acid as this is the ONLY treatment. Go back to your GP/Hospital Consultant and request it. Urso slows progression and in some cases can halt it, but has to be started early to be of any benefit. Good luck!
Thank you for telling me this. I will enquire as to why I have not been prescribed it. Very strange. Good of you to enlighten me.
Take good care.
I really do not think people on the blog should prescribe for others. I also do not take URSO, I believe it depends on a lot of things, among them, blood tests, symptoms, etc. If you have been fine for 13 years and your doctor is aware of your pbc, then I wouldn't worry. But by all means, ask the question.
Calm down, dear LOL! I'm not prescribing anything, merely offering advice which is surely what a forum is about???? :/ Urso when started on diagnosis slows progression and in some cases halts progression totally as it protects the bile ducts from being attacked in the first place. How that can ruffle your feathers puzzles me .............
You were telling another person what drug she should be on. I agree she should ask her doctor . You are cross because she isn't on URSO? Oh my, maybe you should calm down........
Dinnyd, I'm very calm thank you You have taken my note far too seriously. Lost in translation maybe? The term "calm down dear" is from a tv commercial in The UK and I did add "LOL" which makes light of the situation, obviously not 
I wasn't "telling" anybody what they should be on, merely advising as, at the end of the day, Urso is the one and only treatment for PBC and The PBC Foundation and every website I have come across say that Urso is best started EARLY in disease diagnosis as it DOES NOT WORK when started well into the disease, this is why it makes me cross. Taking it late in progression has no benefit. As I said before, I was just surprised that someone with a definite diagnosis and raised LFT's is not taking Urso and that in my OPINION, (no prescribing, no telling) just opinion, that I would have thought a person should be on Urso with said criteria. Unfortunately, tone and humour cannot be picked up on the internet. Shame. Have a good day
Hello Ellean.
Good to know you have gone back to normal with your LFTs whilst on urso.
Mine have come down since starting urso Dec 2010 but then they go up a bit by next blood check then go down again, make a sort of wavy line on a graph! BUT I have been informed they are still within a normal range for someone with PBC.
I have read conflicting information on PBC and prognosis/life expectancy but I have to honestly say I do not take much notice myself.
I've never had a liver biopsy, nor intend to do so as stages of PBC just do not interest me. Any of the stages can be very prolonged and slow in progression and it does seem to vary considerably between patient to patient.
My motto to PBC is to get on with life and live it. I find that despite knowing every day I have PBC (when I reach for the urso I remember) I have also noted a long time ago now that every day can be different from the other. Some days are bad with the itch at night that can carry over to the following day by feeling tired due to lack of sleep because of the night time itching, others I can sleep through the night quite well and feel fantastic.
Even though I take note of the results of the bloods I don't take too much notice these days. I just go with how I feel and get on.
I am in the US and the Urso forte is what I was prescribed. My Dr didn't diagnose me till I was already in stage 4 with the full blown cirrhosis. He said now it's just a waiting game to see if I end up needing a transplant. The Urso forte has done wonders for the way I feel. Still not 100% but anything is better than what I was.
Ellean, don't worry, it's not so bad, this disease, like it sounds for the first. I think urso really works, and of course it's important to learn much about foods. From last researches it's clear, it won't kill us so soon, as earlier was stated. Not even so, most of us will not dye of it, just more possibly simply like others. And probably the higher health-conscious life help us to prevent other sicknesses. In the first year I've read "one year", but now it has changed. Earlier maybe late diagnoses made that bad prognosis. Take care of You, don't worry, it's a thing You can live with for a long-long time, till the end. For me it's my 15th year, though diagnosed and cured only 2 years ago, and I'm working still (I'm 60) and not feeling much worse than people in my age. Of course there are some healthy persons, who can do much more. We have to have some rest more regularly, not eat too much fat, NOT DRINK, NOT SMOKE. And read this site, because You learn much; it's and has been so helpful for me, this took me up after the first terrible fears. Our state is changeable, but when a little worse, don't be frightened, just take a little more care, think over, what has changed in Your life, foods, habit. I gave up not smoking a year ago, due to fears because of pbc, and after some months my blood test was very bad again Most part of our state is in pour hands, what a pity I learned to laugh loudly, and try to enjoy what only possible. Take care and be well!
For people who did not respond to Urso, has Ocaliva had a more positive effect?
This question just to people diagnosed over 15years, are any of you NOT on Urso?
How many stages are there of PBC? And when should the gastroenterologist offer Urso? 
Allergies to URSO. Help What can I do?advanced stage, what does that mean for me?
