I found out I have PBC about 5 months ago. I started on the URSO and the first month I didn't notice any difference but the end of the second month to the beginning of the 4th month I was feeling really great. I didn't have any pain,my, blood work was just about normal and I actually had energy. then, almost over night I felt awful again. My hips, hands, shoulders, and feet ache so bad I can hardly walk, I am taking 4 to 5 Vicodin daily and it is just barely helping, I am sleeping all the time, and I am itching again. I also am getting right side/liver pain. I go for my second appt with the GI specialist on the 29th. Has this happened to anyone? I am taking 300 mg of URSO three times a day. Do you think I will need to up the dose? Should I call my doctor? I was so hoping the URSO would work for me. Sigh.

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7 Replies

  • Stay with it Engasser, it can take a full year to see what your response to URSO will be.

  • Cheers donkey. True as said with regards to time span of responding to urso as I was responding also.

  • Hello engasser.

    Well my honest opinion here is that 5 months on urso unfortunately isn't long enough. I started itching with fatigue in early 2010 and by Dec that year I was on urso.

    Now I wish I could tell you that due to the urso I had spectacular results and all my symptons went away, sorry to disappoint. (I can still recall those 'dark days'.) I thought at the start of taking urso my itch was worse than it had been. The fatigue did leave me within the year but I made a big lifestyle change that was my husband's suggestion (of quitting a full-time demanding job saying we'd manage as he works and I went back into voluntary work) but the itching continues.

    I went through periods of feeling worse then great and I did find that at the 3 monthly intervals I was having blood (that was moved to 6 months this year) when I felt great, the bloods told a different story and vice-versa. I do get an occasional shoulder ache but put that down to strain of lifting as I've been in manual employment on/off since the birth of my first child in 1986).

    My bloods did start to come down rather rapidly after starting urso but then within the year they started to very slowly start to climb again and then 6 months later decline once again, been like that since starting urso for me BUT I have been informed (I asked outright) that for someone with PBC on urso, the LFTs are what are considered within a normal range.

    I experimented myself with milk thistle near the end of last yr and then withdrew and checked the next LFTs. I really do think for me the addition of milk thistle is somewhat helping. I have recently started taking just the one every other day as I think it was contributing to a change in stools, something I never had a problme with prior to ever starting on urso and I seem to be panning out quite normal at present. I have next bloods done early Dec so shall see but on the whole currently I feel absolutely fantastic but got to note it is the British summer even if the sun seems to have took itself off back abroad once again! I utilise the sun as much as I can due to the fact just prior to diagnose I was said to be borderline Vit D deficient but never had supplements for it. I was working indoors nearly all wk so sun wasn't 'utlilised' there for me and I've never been much of a sunbather. My Vit D levels checked out normal on a recheck months later so I'm doing ok there.

    Now I take 600mgs of urso daily as it goes of body weight. My hospital consultant did write to the GP when he got the AMA result back for PBC and recommended he started me at 10mgs per kg of body weight but I know you can go higher. I have myself once again over the last couple years experimented with the urso, varying times to take it, all at once of a morn (started to itch within hours, something I do not do being a night time itcher), with breakfast and then evening meal (works best for me) and even chopped one in half and had half with lunch, half with evening meal but thought that wasn't doing anything somehow. I have even tried adding 150mgs myself from a chopped in half tablet so I'd be taking an extra 150mgs per day BUT for me I found I was itching more of an evening and I seem to suspect though professionals might disagree that I was taking too much urso and for me the 600mgs is fine. I know for a fact that my kgs of body weight isn't the 60kgs that was rounded off too, I'm actually around 7kgs lighter than that.

    I know from reading the leaflet that came with my tablets that in PBC taking a bit more wouldn't actually be much of a problem for us like someone without a biliary condition as excess bile is simply excreted via stools. I feel certain that an excess could somehow be the cause of diarrhoea as some PBC patients on urso experience but I'm the opposite since starting, I find myself going through occasional bouts of constipation.

    I'd say that if you are really worried to seek medical advice but at the same time if your bloods are improving could be well to plod on a bit longer, only you can decide that (or perhaps take a tablet less each day and see?) but it can and does for some take that bit longer to start to appear better. Unfortunately fatigue and also itching are the most problematic of PBC symptons and fatigue is something that you might not be rid of. All you can do is try to eat healthily, get out and about doing jaunt walks as I do almost daily and try not burn the candles at both ends.

    Good Luck.

  • Thank you all for replying. I'll keep plugging along. The hip pain is really driving me crazy though. Ugh. You all made me feel better. I worried about possible vitamin D deficiency, as I eat a plant based diet, but I am outside a lot and take a multivitamin. I wish I could work part time. Maybe in the future. Peridot, you made me smile thanks. I'm not brave enough, yet, to experiment with my meds. I might try milk thistle. I am on 15mg/kg of URSO. Maybe thats too high. I wll have to ask when I go on the 29th. Well thanks again. God bless you all. Patty

  • I've been on the Urso for several years now - six - I think - and I haven't found any difference, tbh. But I think it could be because I have so many other problems - anaemia; arthritis; asthma; depression; fibromyalgia; hiatus hernia; insomnia; Oesophagitis/Reflux; PBC; Raynauds, sciatica + scleroderma. Plus medication for same - 34 tablets/day. I. think all that masks the PBC etc. I have had 14 hospital appts since January and three more to go. Next month. Not sure this is of any help to you. :-) x

  • Sorry to hear you have so many other problems. I am lucky as I only have PBC and fibromyalgia. I will keep you in my prayers and thoughts.

  • Thank you Engasser. Keeping you in my prayers and thoughts too. Xx

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