Urso time limit?

[WendyMarie]

Recently, someone posted on here, that they were @ the PBC conference in Las Vegas. They heard the last doctor that spoke, state that Urso does what its going to do, in the first 5 years of taking it. Does anyone know how long Urso works? My hepatologist which is also the liver transplant director, said to me that Urso helps most PBC patients, but once it stops working, that is when they come see him. Until that happens, their health can be managed by a gastroenterologist. I was sort of shocked when he made that statement & never questioned it further, however, I have thought of it a lot since.

[teddybear7]

I met a fellow sufferer at a PBC conference in Leeds earlier this year who said she had become unresponsive to urso. So I know it does happen but I haven't heard that it's a guaranteed happening.

[Hidden]

Hello WendyMarie.

I was sceptical about urso when I was diagnosed with PBC Dec 2010. I did not cherish the thought of having to take this for the rest of life as I've always avoided taking any medications whether prescribed or OTC from a pharmacy.

I took the urso just to find out what would happen and decided I'd go from there. I did get a good result from the liver function test (LFTs) 2mths later and it continued and then I waned a bit as in did a slight climb and I've sort of been like this since starting. I got a pretty good results back early July, three and half years on from taking urso. I am 50 now and I mention my age as I am not so sure if how old you are when you start on urso for PBC has anything to do with it all.

Now I've always seen urso a sort of supplement as opposed to a medication as really waht we are doing is adding a component of bile to our system.

Personally, I think perhaps there are other factors regarding taking urso that has to be taken into consideration about any longevity that it may or may not work for a patient. For instance it might depend on if your liver in particular can recover sufficiently enough after taking urso and if this is maintained through good dietary and exercise and a relatively stress-free living then I do reckon there is every chance that one could live a pretty decent life with PBC.

I know in myself in the last 4yrs (as I deem I've had PBC 5yrs in the New Yr as that is when I started to itch - it ONLY took a further 9mths for diagnosis and mine was pretty 'straight-forward' with no biopsy), I currently feel far better than I did back in 2010. The one thing that has puzzled me in the interim period though has been the fact that when I obtained my blood results for 2010 just after I was informed I had PBC I did notice that from a still rising LFT test Aug 2010 and then another one the on my first hospital consultation beginning Nov 2010, my LFTs had actually gone down naturally. I do think it is possible that PBC can stutter and stop at times from this so that to me gives me hope.

I know in the US and I am sure it exists here there is some chart that can deem when one reaches a pretty bad state with PBC from the calculations on the LFTs. Bilirubin normally is present as an abnormal reading at the time too.

Myself here, I intend to not think about what could happen over time, I just get on with life here and now. I somehow think I'd be a doctor's worst nightmare if I attended something where you could pose questions as I'm pretty quizzical and this has come with past experience of doctors. I do think that if a doctor was to come down with something that his patients have then he/she would definitely see it all in a different light. I find professionals (and even family and friends) do not think much of the itch I experience every day but if they themselves were to endure it I think it would be a totally different thing.

[breekins]

I have heard that if you are in stage 4 that URSO tends to not be as effective but I had not heard about it stopping after so long.

[NotorDJP]

I imagine that, like most things with this disease, it varies with all people. I think most drugs are going to be come less effective over time, so your dosage may need increased, and I do know of some people that it stops working completely, but I also have never heard that its only 5 years. My doctor says I will take this the rest of my life and hopefully it will slow things down, but as we all know, it still progresses. The key is to slow it down to a crawl. It is so variable with every person that I can't imagine a blanket statement about 5 years being something to take too seriously. It may have been that doctors experience with his own patients, but another doctor may say something completely different. I learned a long time ago that medicine really isn't as much of an exact science as the medical community would lead us to believe

[Mcsv in reply to NotorDJP]

Yes! Your last comment is sooo true! Its more of a sort of artwork that depends on the eye that perceives it. Specially liver issues! I cant believe we must trust medicine when its sooo abstract, no other choice, though.

[WendyMarie in reply to NotorDJP]

Oh, I definitely agree that medicine isn't as much of an exact science as is portrayed. I too, learned that over the years. Reading about people who have been in stage 1, for 20+ years, tells me that is not entirely due to Urso, but that the immune system just is not attacking the liver as progressively as in other cases. I have had MS for 28 yrs. & so far, only had 2 attacks & no disabilities. Neurologist tell me I have a benign case, & as it is with all auto-immune diseases, very unpredictable. That could change tomorrow, who knows. Meds may or may not help, but you take it anyway, hoping it can slow progression.