Has anyone else been on urso for many years ,come off it and improved symptom wise in doing so?

[littlemo]

I have been taking urso for 10years and after reaching the end of my tether with the horrendous itch I decided to stop taking the urso to see if I would feel any different. I based my decision on my blood results over the last 11 yrs which is when I first took the itch amongst other symptoms. There have been no significant changes in my lft readings from then until now so I felt the tablets cant be helping ( I have never had normal lfts in 11 yrs) and felt the urso could actually be contributing to the itch. My itch is much more tolerable since stopping them and I informed my hepatologist of what I had done and he did not mind in the slightest! I thought I would have been given a lecture on stopping them! Over the past year I have been tried on various drugs to alleviate the itch as it had become really unbearable but none of them worked. The questran did and does still help but I can't believe the difference with the itch since stopping the urso! I still have to go for transplant assessment as had been referred due to intractible itch and as still have it but to a lesser degree so will be interested to see what shape my liver is in and will quiz the top specialists as to the use of urso in pbc and if maybe my stopping it is the right thing to do. Will keep u all posted!

[Jaycee]

Hi Littlemo, I too stopped the Urso, I am very lucky as I dont have the itch, but feel loads better for coming of the Urso, my Lft'S are fine,I didnt feel the Urso was helpling me at all, I see my consultant the end of this month so we'll see what he says, but when I told my doctor I was stopping the meds he just said that's fine,I am one of the lucky one's I think, I only seem to suffer from the fatigue and some pain in the liver area. I will let you all know what my consultant says, although I'm not looking forward to telling him All the best.

[Hidden]

I stopped after 3 years of taking it and feel much better as it was making me nausious to the Point I was loosing wieght, now only 7&1/2 stone, now I can eat, my GP said it's okay as he wants me to eat, not seen the consultants side kick till November, I still itch but I have extreamly dry skin, gas and indigestion has almost gon, pity it hasn't improved my spelling.

I also have problems taking other medicens with urso, like paracetamol, and ibruprofhen that i need for bad joint pain.

[Hidden]

Hello littlemo.

Well I have had the same thoughts myself with regards to the itch and taking urso.

When I was given urso Dec 2010 and then saw the hospital doc 2mths later, he sort of made a comment that the itch does improve on taking urso but I have to say that almost 2yrs on I don't think it has made an overall improvement for me.

I thought at the start of the tablets for me it was making the itch worse and it was at this appointment that I said I thought it was not helping the itch at all so he said to me, 'Have you tried stopping it then and noting' which at the time did not make any sense to me as I'd only been taking the tablets for 2mths then!!

My LFTs did start to improve on taking urso after 2mths when I had the first repeat bloods and that for me was what made me continue to take but after all this time and from May 2011 to Feb 2012 when the LFTs started on an elevation again to reach what they were roughly the start of taking urso Dec 2010 it was then that I thought were they doing any good?

I was going to be having the bloods at 6mthly intervals as the Feb 2012 were but the GP asked me to have the next lot 3mths later which was May this yr. In 3mths my bloods had started to descend and they were on par and 2 slightly better than after 6mths originally on urso so that was a bit of a puzzler as to how in mths they could go right back down. I am due the next set of bloods this wk so shall see. The only thing that I did differently from Feb this yr until May was to take milk thistle for a mth as well as the urso so that is all I can think of as I don't drink alcohol, haven't since I had the first abnormal LFT in early 2010.

I can't help wondering if I was to quit the urso and just take milk thistle would the results just come out the same. Also for me I hate going to the GPs, have such a tussle to get the blood test results in a print-out as can't be doing with the comment on asking if the results are back, 'Improved, repeat in 3mths....' as to me it doesn't mean a lot. I could have let May's results just go as they were significantly improved but until I saw the print-outs I wouldn't have known how and certainly wouldn't have known that they were actually the best I had had so far since being diagnosed with PBC as the GP only compared with the ones 3mths prior which weren't so good!

I think it a grey area with urso as at the end of the day none of us really know if the LFTs would be the same or variably different with or without taking urso and that is the thing that really does bug me as I could be taking a tablet every day that I can do without but it is the not knowing!

[LStonelli]

I too stopped the Urso after 30 months....just 5 days after I stopped I am feeling 100% better. If we only knew for sure the Urso was slower down the progression of the disease.

[littlemo in reply to LStonelli]

Thanks for that everyone. My last lfts( including bilirubin which for me is usually always normal) were raised after being off the urso for 3 months so be interesting to see what the ones had done yesterday will say. Seeing my consultant next week and going to ask if just taking the milk thistle will be enough to protect my liver from further damage. Would be loathed to go back on urso as feel so much better off it. I think I may be one of the 15% of pbc patients who feels better off urso than on it, in regards to the itch anyway as it is much better since came off it. Mind you my liver may have other ideas case of wait and see! Btw I would not advise anyone to come off urso without consulting doctors.