Am I the only one not taking URSO with a PBC diagnosis?

Should everyone with a PBC diagnosis be taking URSO? Whilst being investigated for a myriad of symptons (turns out at 52 I am menopausal and am now on high dose HRT - another story) I was diagnosed last year with PBC. I was told I was early stage PBC and my LFTs were within normal range. At the follow up appointment I asked the consultant about URSO . He skillfully evaded answering and I left the appointment more frustrated with myself for not getting an answer and none the wiser as to whether I should be on this drug.

Anyway, on a better note, am hoping we will all benefit from the spring/summer days to come.

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  • Hi,

    I too was diagnosed with suspected PBC a year ago after investigations into back, muscle and joint pains. Like you my LFT's are normal although I also have gallstones which cause discomfort, again discovered during testing. I have seen a gastroenterologist 3 times and asked about URSO as I had read that it may delay progress of PBC. He says not until I show symptoms. Like you I'm 48 so classed as menopausal so when I mention fatigue he laughs it off.

    Am due to see him in 2 weeks and will ask again.

  • HI

    I am on Urso as when tested my blood counts were 8 to 10 times higher than normal... They are now about 4 times higher after about 3 months, so if yours are within normal range it is probably why the consultant has not discussed using Urso. There are lots of articles on the web that make interesing reading ( e.g. liverdisease.com/pbc._hepat... Maybe take some of the info to your next appointment, although it sounds like you might have to tread carefully... Good luck

    Lou

  • From what I understand regarding URSO, nearlyThere, it is used when one apparently is in some sort of stage of PBC.

    All I can add is that maybe if your LFTs are of a normal range and that is what URSO is supposed to aid, decline in elevation, then perhaps there isn't any point in taking? I personally would opt to not take URSO myself, not very good at taking tablets, never have been but now taking just URSO possibly for the rest of my life does not appeal at all. Please note that is my view.

    I take it that your LFTs will be monitored at intervals to keep an eye on them for an elevation?

  • From what i understand Urso is to help keep the bile ducts flowing.

    I have also heard that even if your liver function tests are within the normal range the disease is still progressing. Dont know if there is any truth in that though.

  • I think it varies in the early stages between consultants. The first guy I saw was adamant that as things were fairly steady it was better not to interfere and did not reccomend starting Urso. I saw his colleague the next time (3 months later and no changes in condition) and he was apalled that I hadn't been given it and prescibed it immediatly. My LFTs are in normal range now so maybe it helps.

    Incidentally Peridot, I have difficulty with swallowing and I take urso in suspension form, much easier than those huge tablets!

  • Hi

    That is interesting - I was allergic to the capsules and so now have tablets, which are small but bitter. May have to ask about suspension. What does it taste like?

    Thanks

    Lou

  • its a white milky liquid. Didn't really like it first few days but very quickly became used to it and don't even notice it now.

  • Thanks Tinks

    I will have to ask about this.......

    L

  • PS Just noticed your last bit tinks, sorry but at times, know what I've typed but then on read-back can have another meaning.

    I meant that I've never been good at taking any drugs, always been of the 'less is best' but now I begin to wonder..........

    ......should I have been a smoker and a frequent drinker......but I guess a lot is just luck of the draw.

    Struggle to accept PBC is with me as I always thought I looked after my health and shrugged things off but it is said it takes time for it to fully sink in and then slowly you accept and start to adapt.

  • I was told that I would be prescribed Modafinil on month one and Urso on month two. My blood tests were ok so the Urso hasn't been given. I will be reviewed in 6 months, but I am happy with that because the real struggle for me was tiredness to the extent that it hurt. Keep asking. Best of luck.

  • I was informed by my doctor and consultant that Urso does you no harm and it was the best treatment to slow down the progression of PBC. I take 4 a day (1000mg) as it is worked on on a weight/height ratio so everyone is different. Good luck. x

  • Urso eventually gave me bad side effects and every other drug specialist tried so only thing I take is for itch. I have 3 months appointment with specialists and bloods taken ever time. He says all he can comment on is the pbc and all symptoms they can do nothing for as they don't know why we get them and they cannot fix us only monitor as they have no idea why we get pbc. If I need other tests( had joint issues) was quicker him referring me than my gp but other questions ( vitamin deficiency) have to go through gp.

  • Hi I had very high lfts at diagnosis and was put on 750gs of Urso, initially this did lower the readings but in February last year the results had gone back to higher than when diagnosed, and was told I wasn't responding to it. Since then I took part a clinical trial and then at the end if that was put on ripaficin for the severe itching that I have. This seems to have helped with both the itching and lfts and i have also increased my urso to 1000gm. My consultant is Fantastic and knows all about PBC and really looks after me.

  • My consultant did not automatically put me on it , I had to ask after I'd read about it on the PBC Foundation website. His attitude was "Well it won't do any harm". I had abnormal LFT's at the time, but after 3 months of taking it, they went back to normal, so I would definately reccomend it. I was just surprised I had to ask him.

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