This question just to people diagnosed over 15years, are any of you NOT on Urso?

I was on Urso more or less for 10yrs since diagnosis in 2002 but came off it in August just passed and unfortunately my lfts are on the rise (not that they have ever been normal despite having been on the Urso) and wondered what your experiences are re your lfts and how you feel in general. Incidentally and somewhat ironically, I have been feeling great apart from fatigue being a bit worse since being off the Urso.

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  • I was diagnosed a year ago, but my LFT's started going up 17 years ago after chemo for breast cancer, so I may have had this for several years without knowing it. I just assumed it was caused by the chemo. They go up and down, normal for awhile then up again. I have never been on URSO and am not now, maybe because I have very few symptoms. What are the criteria for URSO apart from a diagnosis of PBC?

    Judy

  • I presented with itching and fatigue back in early 2010 and the GP took bloods which then showed elevated LFTs. Mine went to a deranged state over the next 6mths as by the time Oct came around and I went for the first hospital consultation they had actually decreased normally.

    The itching persisted but the fatigue slowly disappeared (and these days I have more wide-awake days than I do feeling tired). With the LFTs and the GGT blood plus itching and then the AMA blood test which was positive I was diagnosed with PBC and started on urso.

    I presume for one who has abnormal LFTs but perhaps with not being in some higher range (I'd like to know the actual figures but no-one has ever been bothered to explain) and not itching or having a negative for AMAs then I think from others on this site urso wouldn't be used unless a time came when symptons appeared and LFTs showed otherwise.

  • Hi Judy thanks for the reply. Gosh you have been through a lot and now PBC but I hope and pray that when you have beaten cancer you wont let a little bugger (pardon the pun) like PBC get you down. I was put on the Urso because like Peridot I had raised lfts which were done as I was suffering from chronic itch, fatigue and joint pains and investigations showed I was positive for AMA which is more or less indicative of PBC. The consultant put me on the urso albeit reluctantly to see if it would help with the itch. Ironically it didnt help with the itch but as I assume it must have looked as if it was keeping my liver stable I was kept on it. You can read on my blogs all my experiences to date on living with PBC. I was diagnosed in 2002 after having the symptoms for about a year. Take care and keep smiling and keep positive as many people on here know you are more likely to die with PBC than from it. :-)

  • Thanks littlemo, I guess I will not expect to go on URSO unless and until I develop symptoms that would indicate my need for it.

    Judy

  • Out of interest littlemo and you may have posted on here previously with regards to urso but why have you stopped using it.

    If your LFTs have started to rise again have your thought of taking it again just to see and if the LFTs start to decline once more then could it not be best to keep on taking it?

    My LFTs have not got back to a normal state since starting urso Dec 2010 but apparently they are within some normal range for one with PBC according to the doctor (I've yet to see their chart they use for gauging the bloods, would like to see it but seems top secret like every time I have bloods and want a print-out, always some sort of battle!).

  • Out of interest littlemo and you may have posted on here previously with regards to urso but why have you stopped using it.

    If your LFTs have started to rise again have your thought of taking it again just to see and if the LFTs start to decline once more then could it not be best to keep on taking it?

    My LFTs have not got back to a normal state since starting urso Dec 2010 but apparently they are within some normal range for one with PBC according to the doctor (I've yet to see their chart they use for gauging the bloods, would like to see it but seems top secret like every time I have bloods and want a print-out, always some sort of battle!).

  • Hi Peridot yes I have mentioned in my blog about why I went off the Urso mainly to see if would lessen the itch which am very happy to say it certainly has done. Itch now mild, tolerable and well controlled with the Questran, only thing is my lfts including the bilirubin are on the rise unfortunately though ironically I am feeling great apart from the fatigue being a bit worse but I can manage this ok with good support from family and work colleagues. I started on Milk Thistle two tabs a day about 4 weeks ago and this has taken most of the lfts done but bilirubin still bit raised but not majorly. You have the right to ask for printouts of your blood results the normal range for the lfts is usually put in brackets beside the blood result numbers eg. Total Bilirubin 35 (1-17) whatever your level is will be the number before the brackets. Mine at the moment as you can see is 35. The ranges vary from lab to lab but whatever lab you have yours done in will print what their normal ranges are on the blood lab print out. Hope thats helpful. Take care. :-)

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