I have been diagnosed with PBC in 2010 and have been taking Urso for 6 years. I have my LFT's done regularly and the results are a bit like a roller-coaster. Although my various LFT's continue to rise my ALP levels are always extremely high. After a couple of years I had not seen any improvement through taking Urso I ask my consultant why should I continue to take it? He said patients taking Urso who's LFT's improve are classed as responders and those who don't improve are non-responders. My consultant has always told me Urso does not slow the progression of the disease down but it contributes by supporting it's daily function therefore hopefully protecting it from fatty lumps developing and scarring of the liver itself. I have continued with Urso regardless of the itch and that I am a non-responder in the hope that it may be protecting my liver in some way. I think it is great that we share our knowledge and find it so helpful but I'm sure if your like me I find it frustrating and at times a bit worrying that so many of us get conflicting information. Anyway I hope some of you find this info interesting. Stay strong
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TracG
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I was diagnosed with PBC December 2010 when I was 46. Like yourself I am almost 6yrs taking urso.
I personally do not specifically state that urso slows down the progression of PBC but I take it to mean that by taking the urso we are improving as you have said digestion of fats in particular (as that is what bile does most, acts like a detergent and breaks it up) and by doing so it causes less stress and strain to our liver that can start to repair itself if we are not at a more crucial stage of having PBC. I'd then say that if this is what is happening then our liver is going to perhaps have more longevity and this is where the term we do hear about. slows down progression' comes from.
Since I started taking the urso my LFTs did drop down considerably within the first couple months and then continued so but after around 18mths they started to slow down and then I had results that showed a bit of a rise and then the next time a drop. I'd make a wavy line on a graph. They've never returned to normal as it isn't expected that they will do so though some with PBC taking urso can do. To note, my ALP and ALT sort of see-saw each time, one goes up a bit, the other down.
I go with how I feel even though I think when we have PBC we haven't really a true picture. I've found that when I feel I've not felt so good, been itchy a lot more or feel more tired due to broken sleep (I itch later at night these days, lasts until around 5 - 6a.m) I tend to have good LFTs back and then when I feel I'm 'on top of the world' they don't come back saying so!
I do think that urso and the LFTs (and also the GGT the other blood we usually have done that apparently indicates inflammation of the liver. Mine too has dropped over time but it's still not normal), the results to me anyway feel a bit false at times and I reckon it is due to taking urso that does this.
I think if you are managing well taking urso despite it being thought it isn't making you 'respond' as the terminology is, then why not just carry on. I think one would be worse off not taking it once started.
Hello there, I understand that there is a new drug currently undergoing clinical trials which is hoped will help Urso non-responders. All the info is on the PBC Foundation website. Maybe have a look and raise with your consultant at the next visit?
The new drug is call Ocalvia and from what I read it helps to lower ALP. I stopped taking URSO a couple years ago, with my specialist support) because the side effects, for me, were intolerable. I thought I would prefer short life feeling ok,than longer feeling so miserable.
As I read on many sites everyone seems to have different stories in regard to URSO, its effectiveness as well as what their doctor believes. Personally, I do what is best for me, I have taken heat from some about not taking it bit to each their own. I have seen some patients on it 20 years and barely advance and other who stat it a stage 1 who have progressed to Transplant within 5 years. It occurred to me, who knows if the same outcome would be had URSO another been taken. Each patient seems to be unique. For me since I quite my LFTS have remained stable or even fall into normal range, such as ALP. I was diagnosed in 2012 with cirrhosis. Stopped taking URSO in 2014 and I don't regret it.
I think it is a personal decision; not to be taken lightly, and with the support of your doctor. Every patient is different so what works for one may not for another. Take care.
yes, there are several new drugs in clinical trials right now for the itch, fatigue, overall cause, and the brain fog. Much work is being done to give us other options.
I got great results with urso but it made me so depressed and side effects weren't good so specialist said I could stop taking it. He said there is a split in thinking that we should all take urso or not.
I'm sorry to read that you stopped taking it. Are you willing to try taking antidepressants? I have for many years... Urso has been proven to be the first line of treatment for PBC. Are your numbers remaining stable not taking it?
Being a non responder, your LFT'S have not improved at all? Will you consider fenofibrates along with the Urso? This has proven effective for many. Or Ocaliva?
LFT'S have never improved. Hadn't had the itch for years but came back a few months ago much worse than before. As I now live in a different country I have a new consultant. First put me on Cholestyramine which did nothing and sometimes felt it made it worse. He then put me on Bezafibrate 400mg daily which worked from day 1. Due my blood tests beginning next month so it will be interesting if they has been any improvement. Stay strong 💪 😊
yes, there are so many drugs available for the itch. So glad you found one that worked for you. Let us know how our blood work is. How long have you taken Urso? are you sure it's the right dose? this is a common mistake. For many it can take up to a year to see positive results from Urso... if not, some take Ocaliva or fenofibrates along with the Urso. We're all sending positive thoughts for good lab work.
Thank you for your kind reply. Definitely on the correct dose. I've been in Urso for nearly 14 years now. Over the years I've seen many positive comments about Bezafibrate so I'm hoping for some improvement. Where I live Ocaliva is very expensive and it's only recently become available but only prescribe if you meet their criteria. Thanks again for the positive thoughts. Stay well & strong 😊
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