Anyone every been told in years how much the Urso can slow down the progression of PBC?

[littlemo]

The reason I ask is that I was told at my last appointment when I asked if I needed to go back on Urso( due to my Lft enymes being very elevated though Albumen normal and Bilirubin only slightly raised at 30) that even if I did go back on it, it may only slow down the progression by a year or two tops! I was told this quite abruptly and while I appreciate that on that particular day at the OPD it was extremely busy I was totally flabergasted and in shock as never in the 11yrs from I have been diagnosed have I ever been told that. Am now wondering if he meant that for me personally or for all people with PBC in general. I certainly do not want to go back on Urso as my itch is so much less and more controllable since coming off it last Aug than in the 12 yrs since I was diagnosed with just taking the Questran Light 2-4 sachets a day. This disease is so ironic in my experience you could feel like "crap" (excuse the expression) and have no changes in the bloods wheras now I feel relatively good and yet my bloods are not so good! Go figure confused.com! Any thoughts would be appreciated

[Axl888]

Hi there .... It works differently for each individual I think and works in some but not others. I personally feel a lot better not taking URSO but my LFTs went up when I stopped taking it for about 8 months. I am back on it again and will wait to see what my next lot of results are in April ... started taking it again at the end of December ... consultant said he wanted to leave blood tests for three months so allow time to get back in my system and start working.

[littlemo in reply to Axl888]

Hi Axi thanks for that. Did you go back on the dose of Urso u were originally on and in one dose or did you go on it in divided doses like when you were first started on Urso?

[littlemo in reply to Axl888]

Hi Axi was just re reading that and wondered how are your lfts now after restarting the Urso?

[Axl888]

When I was first put on URSO it was one tablet three times a day, but I always forgot to take the morning and lunch time one so then consultant said take them all at night. I just take three tablets at night now ... dosage not changed.

[Magnolia]

Littlemoe, I honestly believe that the urso slows down the progression a lot. The first GI dr. I ever saw made me feel like I should, at that time go to a Liver transplant clinic and be elvaluated for a transplant. He said you may live to be 80 yrs old, but you will need a transplant.

I started reading all I could about this disease, I can't retain what I read well, but I knew when I went there, that my bile numbers where not high enough for that, and they agreed with me. It's been 13 yrs of me on urso, and no big change has happened, as of last yrs visit, including no show of scarring of the liver on the scan. So, I believe this med has done something for me I'm due to see my Dr. soon and will give the results of this year afterwards.

Magnolia.

[littlemo]

Thanks Axi and Magnolia I definately want to get a second opinion on this. I do hate the thought of going back on Urso but if I thought it would keep my liver stable for many more years meaning preventing or delaying me ever from ever needing a transplant then I would go back on it.

My problem is that if the itch went back to how bad it was when I was on the Urso specially in the last yr of being on it 2011-2012 then I would be back to "square one" i.e. with intractible itch and going back to Kings to be considered again for going on the list. However if I stay off the Urso and my liver continues to deteriorate am going to end up looking at transplant anyway! Its a case of catch 22 with me I feel:-(. However maybe if I took a lower dose of the Urso or took it in divided doses the itch may not come back to the level it was when was put forward for transplant assessment last year. All this is why I really need the second opinion Hepatology wise. Thanks again will keep you posted.

[Hidden]

Doesn't it somehow figure that if one is taking urso and having better or with some PBC patients back to normal LFTs that it is halting progression somewhat as the liver isn't showing the same signs of suffering.

I myself had continual climbing LFTs during 2010 but they did start to decrease of their own accord prior to eve starting on urso when diagnosed Dec 2010. I put that down to changing my lifestyle as much as possible once aware there was definitely something wrong (tho' I was still hopeful at the time it was temporary).

The urso started my LFTs decreasing and though there has been a few that have climbed since Dec 2010 they have bounced right back down again at the last blood test. Given I feel almost 100% normal again during the day it is only at night when I get the itch (though the last 2 out of 3 nights I've not had it, the 2 together prior to last night which wasn't so good), that to me says a lot.

I think if the LFTs can be kept at a reasonable level whilst one is taking urso as well as attempting to look after oneself even better than one thought prior to diagnosed with PBC then surely that has added years to one's life span as opposed to only giving them a small amount of time back?

I've never been informed urso is a miracle cure-all by the doctor, just the statement 'It might slow the progression down' as it is different for all on urso. He did state before he ended that for some it 'can lead to transplant' but didn't say more there as naturally it might be something one never has to ever think about.

[littlemo in reply to Hidden]

Hi Peridot I have been living with PBC for 12yrs now and believe me have very much watched what I eat, drink etc over the years( to keep me healthy and to prevent my liver from deteriorating. My question is really directed at folks who have been diagnosed a long time ago like myself re a time-scale being put on how long the Urso would potentially slow down the progression. Its a case of my deciding what is best for me personally but as said to Axi and Magnolia will definately get a second opinion from the experts in the field and base my desicision on that. Ta for your opinions though. Sadly I have never had normal LFTS even though I had (when I was on it ) always taken the Urso religiously over the years until last Aug (as I think I mentioned in a blog) when I had had a horrendous year with the itch much like the year before I was diagnosed with PBC when I thought I would go insane with it as it was with me 24/7 and nothing I did or took would settle it to tolerable levels. However since coming off the Urso the itch is mild and tolerable day and night with just taking the Questran Light. PBC is a very weird disease as have said to people. Eg. when I was pregnant( during first trimester) I felt fantastic yet my liver was taking a dive into failure! But thankfully bounced back from that. I now feel relatively good but yet my LFTs are crazy though thankfully the Bilirubin is only slightly raised and Albumen is normal which is good so as say its a weird one!