Has anyone who had abnormal lft,s when diagnosed with pbc had normal lfts since starting urso?

My lft's were very abnormal since the year before being diagnosed with pbc and despite being on urso more or less since then, 10yrs ago now, have never had noramal lfts and ust wondered if this applies to many pbc sufferers and if I should perhaps discuss stopping the urso with my consultant. I have suffered ith the itch for 12 years now and with the side effect of urso being itch just wonder if be better off without it at least as a trial, anyone else in same situation as me tried this?

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  • Well it seems if its not working, then Id stop taking it. Have you developed cholestasis yet?

  • I was diagnosed with PBC Dec 2010 and did get print-outs at the time of the what was considered abnormal LFTs done over 8mths prior to diagnose and being given urso.

    My first reading after starting urso was done Feb 2011 and there was a definite improvement as was the next one done May 2011.

    Then 2 consecutive LFTs done Oct 2011 and then Feb 2012 showed them to be going back in the wrong direction again, the Feb one was back to similiar reading as to the first one done 2mths after starting urso.

    But May just gone, in 3mths the readings were actually the same and 2 readings slightly better than the first dip May 2011 after starting urso.

    So I conclude that altho' my readings may never return to normal with urso, at least with a pretty good stability (as they aren't overly-bad considering currently), if that can be continued then it must be by far better than continued elevations?

    Thinking about it though, altho' there are exceptions to everyone with PBC which is more than likely due to when PBC was discovered I actually wouldn't expect LFTs to actually be normal now due to it being something that will always be there.

    Agree that for some of us urso may not be the answer and I'm sceptical myself with regards to it but at the end of the day I think it all depends on how we feel as an individual to what we decide. I know at present urso does seem to be of some help tho' I find it a bit disappointing due to being a bit ill-informed by the doctor at the hospital who prescribed that it would actually be the answer to the itch when in fact for me it's not the case. (It's not as persistent as it used to be these days so that's somethng.)

  • Oops, should have read through before submit.

    On my third paragraph, I should have put 'the first dip Oct 2011' and not 'May 2011'.

    Hope this has helped littlemo but at the end of the day I think it depends how you actually feel. Do you feel better in yourself in taking urso or do you think it hasn't or isn't helping yo any longer.

    Also, if you are being monitored bloodwork-wise then I am thinking that a doctor would have mentioned?

    My GP asked me to go in for my last repeat 3mths later as opposed to 6mths due to the last 2 dipping in the wrong direction.

    I was a bit astounded actually how there was a vast improvement in just 3mths so you never know. Also think certain times of the year could have something to do with inclines and declines!

  • Hi Peridot this pbc has baffled me over the years just as i think i have cracked the code of making the itch bearable it flares up again. I truly don't know if the urso has ever worked for me. The only time was ever off it was when I was pregnant 6yrs ago and had been off the urso for about 6months (on dr's orders) and my liver took a huge dip( almost ended up being put urgently on transplant list!), however when went back on urso lfts setled down again to what was normal for me. I have never had normal lfts since diagnosis in 2002. The hep consultant thought the major dip was due to the pregnancy I felt it was due the lack of urso guess will never know. Mysterious aspects of this disease.

  • Thanks for that my prob is my memory of what way my lfts have been over the 11yrs (used to keep record on the old floppi discs but as now have new pc's can't look at these, should have just kept paper copy!) so I am going to get a copy of my medical notes to do some investigative work. Also when I see the hep team in London going to ask them plenty in regards to all the liver research re the urso and their professional opinions and experience of it. In the uk we are not given the amount of info they seem to be given elsewhere in the world. In some respects this may not be such a bad thing as I think for some people too much info may cause too much worry. On the other hand knowing what is going on in regards to our livers would help prepare us for what to expect and thus allay some fears.

  • Agree there with regards information here in the UK.

    I switched GPs Feb 2011 as given I'd rarely been prior to 2010 when I started with the itch, I sort of hit a brick wall and despite me seemingly knowing what wasn't wrong, the GP I used to be under would have had me in hospital for allsorts of exploratory investigations. He wasn't aware of PBC when he told me the hospital doctor has wrote to him Dec 2010 and requested I be given urso and that I had PBC.

    I thought I'd chosen a good practice last yr but I somehow must have managed to book a first appointment there with a GP who seemed willing to just give me blood print-outs and also go thru the actual results with me there and then. Despite him putting on my records that each time I had bloods I could have print-out even if a doctor didn't ask me to go in to see them but that's proved a bit useless as last two times since I've had to see the GP I was automatically registered under and I am not so keen as he did say to me in person he couldn't see why I wanted a print-out!!! Saying that I expect he's put me down as 'neurotic'!

    Yes too much info can cause worry to certain people but I also think that some of us do like to know. I say this from previous experience with my first late husband and that - all these years later as it was 19 now - has carried over still as I myself am finding the same brick walls that we had to contend with back then.

    I still think majority of doctors just do not listen enough to their patients.

  • I started taking Urso in March this year, was diagnosed with PBC in Feb and LFT's had been elevated since August 2011. Blood test in June showed LFT's have come down almost to normal.

  • I have been taking urso for approx 15 yrs and for anumber of these yrs I didnt seem to see any improvement in lfts. In the last few yrs my lfts have almost returned to normal levels. I hope that you will experience similar.I have been lucky in that I dont have any side effects from urso -i may have been less inclined to persevere with it if i had!

  • Hi Bridget may I ask how u found out u had pbc and what ur first reading of alp was and what it is now? I am wondering whether r not to keep taking the urso if it i not making any difference and culd possibly be making the itch worse but as said am going to discuss it furher with my consultant and other speciailists.. I just feel if I could just find something that would control the itch I would be so much happier and hopefully could live with the pbc til a ripe old age!

  • My LFT's have come down since taking Urso, been taking it for 2.1/2 years now and I seem to be improving blood wise!

  • Thanks everyone i got a copy of my very first lft done in 2001 today and compared it with my most recent one and there is no major difference in the readings. My alk phos has risen further which is not good I know, but my serum bilirubin and albumen r still normal which is good. The question is I suppose is that if I hadn't been on the urso this pst 10yrs would tne pbc have progressed quicker as opposed to the urso not having improved the lfts or worked on alleviating the itch. However I am as brown as a berry (people keep asking me have I been on hols! Am usually as white as milk being Irish so the only up side to me having pbc is my lovely bronzed appearance making me look so healthy but feeling like a wreck lot o the time. But am still determined not to let this disease beat me!

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