Any one still got high ALP although taking Urso other blood tests ok just wondered if it can be still high due to something else causing it and not PBC my last blood test came back 525 before taking Urso it was 1114 very very high been on Urso 11mts I though by now it would be normal would like to hear what yours is and how long it took to get normal if it ever has Take Care x

17 Replies

  • Ur the first person on this site to even mention ALP the precursor for pbc .. Everyone is diagnosed purely on AMA , with what I have learnt lots of people walk around with AMA in their bloods doesn't always mean disease.. I wish u well

  • Normally the ALP, ALT and also GGT are abnormal in PBC. For me it was these that were slowly climbing over the months that I ended up seeing a hospital consultant about. He then took note of the abnormal LFTs and also the fact I was itching and did the AMA that he diagnosed with.

  • Hi, I have had PBC for 15 years. My ALP is always high. Urso is meant to slow down the disease not cure it. Only once has my ALP been near normal. Hope this helps :-)

  • Me too, always high. Everything else has come down with the Meds except this. My consultant just accepts it as part and parcel if the disease. My cholesterol is v high too.

  • Thanks all but when you say that your ALP are still high after taking Urso how high is yours and how long have you taken Urso may be it never gets normal like a lot of you say but thought mine was really high at 525 x

  • Hi Cavi. See my response below. 525 is still high but the important thing is, it's on the way down and that's a significant drop which is great. I suppose if it stalled now and did not continue to decrease over coming months then your specialist would investigate further. I would take comfort however in this definite downward trend. Good luck.

  • My ALP is still abnormal and also my ALT. One of them but cannot recall which comes down one time, then rises and then down again but apparently I'm quite normal for someone with PBC.

    The GGT also rises and falls at times too as this is one that is also expected to be abnormal in PBC. It is a sort of marker for liver inflammation.

  • Hi Peridot This is what as happened to me went in July for blood tests ALP 435 now in January its gone up to 525 so I hope Urso as not stopped working for me. x

  • Hello cavi.

    Well without getting my results out and rechecking, I am pretty confident that I am right in stating that mine go up and down by under 100 at odd times like you have stated.

    My opinion here is what I do mind, I just take it in on receiving the results and then crack on with living and hope for a different result next time.

    If you are not as bad as you was prior to starting urso then personally I'd not worry at present. That's me though. How do you feel in yourself?

    I tend to find with myself that the later end of the year my results never show up that good but then they pick up come the Spring.

    I somehow think that it wouldn't be deemed a case of the urso stopping working unless you had continuingly rising abnormal results.

  • Hi Cavi. I think considering how high your ALP was initially, for it to have halved in 11 months is very encouraging. I would think it would continue to decrease but can you ask your specialist's opinion ?


  • My alk phos does "bounce around"....MD's wording, It has gone up the last two blood draws. I am concerned as I have taken the Urso exactly as directed. Waiting for call back to see if I should be on the higher dose I once was.

  • Hi Chippy 45 yes I thought I might need a higher dose what are you taking at the moment .x

  • Hi Cavi and Chippy. I am on 1000mg as in Australia Docs tend to go for upper limit: 15mg/kilo and then round up. The consultant I saw some years ago fiddled with the dose over a year to see if it made a difference. I took as much as 2000 mg during that time and it had absolutely no beneficial effect at all. So it seems 10-15mg/kg is still the way to go! Hope this helps a little!

  • 133 pounds...I am on 750 per day. Was on 900 at 136 pounds...not sure of why the reduced dose, but phone call from MD office today said weight is not a factor with me . I see him the end of month...his first opening. He also wants me to get repeat MRI...they are watching an area on the top of my gall bladder.

  • I'm not sure what that means. Apart from my own anecdotal experience, high dose Urso: once the mg/kilo has been exceeded has not shown to be of any benefit. Hope you gain clarification with your specialist.

  • Hi. My last ALP which was taken at the end of November was over 400 which was on the high side for me and had been taking urso as normal. I had started to suffer from itchy hands aswell. I decided to watch what I was eating and cut down on my fat intake, no crisps, biscuits, chocolate, cakes, all the nice things I love to eat. Got blood taken last week and my ALP had came down to 280 which is more like it usually is so I'm happy with that. Maybe worth also watching what your eating and see if it helps you too. To be honest it's fantastic your levels have halved since taking urso. Good luck..

  • Hi Gilz1702 You could be right have been eating a lot of rubbish over the Christmas holiday so now back to normal eating maybe they will come back down again I hope .x

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