hi just had a bone density scan yesterday, liver biopsy showed severe bile duct damage ??? I also have had fatty liver for 3 yrs, started

urso,makde me feel spewy and like a puffer fish waiting to explode, none of my clothes fit and I don't want to wear kaftans for the rest of my days. im looking into chinese medicinal medicines atm as an alternative,thought my energy levels would have picked up but alas no, I never know when nap time will attack, so just go with the flow,like having a car and not knowing when it will run out of fuel lol I am spose to take urso 4 times a day,my hubby said hed noticed the bloating but didn't want to say anything...bless him, does this affect everyone the same..apparently I have a perfect bmi, so it has to be the meds.. good luck everyone with this pbc, we can only do what our bodies let us,and take each day as it comes,some are good ,some are bad ,but there will always be hope

27 Replies

  • Urso does the same to me, I take three 250mg a day and when it gets to chucking point I have to lay off for a day or two, I told my gastro and he said just to take one when I feel that bad. I also have to take osteoporosis drugs, calcium and vit D and they make it worse as I don't go to the loo for days, I don't really know what the answer is apart from keep taking the pills and see if it settles a bit, it does with some members and I hope it does with you.


  • yay,some one who knows what im talking about , must admit didn't take them yesterday, couldn't face the hour long drive in and out of town feeling like that , and I did feel better in myself, I guess everything is a learning curve,i drink heaps of milk in coffee and eat yogart for the calcium as the tabs clog me up too. I read the other day that an extra cup of coffee helps pbc sufferers ,maybe it keeps us awake lol, best of luck

  • I use to take urso but couldn't tollorate the side affects so stopped. I find I do get tired and sleep a lot at weekends but still work a full week. I find eating porridge is good for keeping you regular with bowel motions. Might be worth giving it a try. Good luck and hope you can find a way to tell your condition, I am the boss and not you.

  • I eat porridge some mornings but since I stopped smoking I can't face or stand even the smell of coffee even tea makes me feel a bit ill, I was told that if you drink more water it helps with being regular but I just bloat up more.

    DM1360, I suggested to the osteo consultant that i use the yoghurt but she said she would rather i take the calcium and vit D pills, I have to go and see them next week anyway as the osteo drugs I was on ( stroniam Renelate ( protelos)) have been withdrawn as being unsafe as they caused cardiovascular problems in people so everyone has been taken off them. I have already had a biophosphates infusion and alendronic acid and neither agreed with me so god only knows what I will get now, I really just want to be left alone and stop being poked about and getting nowhere. ( you know how it is ) i am more concerned with my liver than my bones and don't want to take anything that will harm it unnecessarily, i have started to treasure it and protect it as much as I can :o))))

    XX Linda

  • Hello dm1360.

    Well I've now been on urso for almost 3yrs and at the start of taking it (Dec 2010) I suffered bloating and heartburn for a few months at the start. That disappeared but I have noticed since taking urso that I go through bouts of feeling constipated.

    Now Sept 2012 I started feeling like I did when I originally started on urso and on checking the tablets, I noticed the brand name of Urdox had vanished from the box so did a bit of fishing. Found out that the tablets I was taking were cheaper ones to the NHS but from the same pharmaceutical. There might have been a slight filler ingredient change to the previous Urdox so I suffered the temporary side-effects once again. Now I have just started on another cheap to the NHS urso due to the 300mgs I was taking being recalled July. So wonder now what this is going to turn up for me.

    Flaxseed is a good ingredient to chuck in baking and also in instant porridge and high in fibre. As is oatbran which you can buy seperately. I put it in instant porridge and also the traditional oats too.

    Going back to the urso, I recently just forgot to take one of the tablets (I was on 2 x 300mgs per day then, now it is 4 x 125mgs but taken 2 at a time twice daily), I actually thought I felt much better, hardly any itching that night but not sure if coincidence as of a rare occasion these days, I can manage a night pretty itch-free. I keep wondering if at times it would make sense to ditch the urso for a day or two as Linda states. I know when I did purposely at times up until a year ago along with not much to eat just for 24hrs but drinks and a bit of solid food come early evening, I felt much better inwardly. I sometimes think it could give your body a rest and may aid temporarily.

  • Oh jeez I'm reading all the posts and one thing is clear NOBODY knows the right answer for us,we literally are on our own regarding this illness aren't we???.We are none of us sure what do or what is the best medicine...I was also told that taking to much medicine can cause more damage and taking certain medicines together counter react so that scares the hell out of me.Im exhausted My bones ache,I'm bloated,I itch & I feel so low & frustrated.

    I feel for you all,seriously it's awful :((

  • Hello Universal44.

    Apparently an overdose of the urso in PBC wouldn't actually be of significance due to the condition. The excess for us would be expelled out via the faeces.

    Most drugs are toxic to the liver regardless of PBC but in PBC with a compromised biliary system I expect it will add extra stress to the liver to deal with it.

  • Hi,I can't loose weight either,very frustrating.im a good eater ,I excercise & I get the nothing on weight loss,I don't want to give up but feeling very defeated

  • Hi I've been told to take all urso at once at night...to avoid side effects.. I've only ever experienced mild heartburn and nausea on a few occasions and that's it.. Give it a go.. My hepatoligist is one of the leads in this field.. And is very knowledgeable.. He's also championing alot of the research.. I'm in North East England..

  • I think I may give that a try as I took one this lunch time and felt awful all day but now I have had my dinner and taken two I feel better, I have done this of previous odd occasions when i have forgotten my day time one, I will try 3 tomorrow night and see how I go. As universal says we are on our own with this. Nice to have each other, I can feel it's now time for a scratch :o)

  • Linda I haven't had the itch since I started taking it either.. Here's hoping it works for you guys

  • Hi Jpmac was ur itch bad before you started on the Urso? What dose do you take and do you take it all in one go or in divided doses? Sorry for all the questioons its just I may have to go back on the Urso and have been thinking a lot about the way I used to take it or the particular brand I was on wondering if I do go on it what way I should take it. Thanks for taking time to read this and hope to hearfrom u soon. Bfn. x

  • Hi yes quite bad thought I was allergic to my husbands cats and my perfume..for about two years.. Before that I think I blamed it on midges or insects biting (when no insects visible).. MAlways scratching.. 6x150mg (weight determined i think I'm 61kg) right before bed with a little snack..

  • Apparently there is no wrong or right way of taking urso. Seems that specialist opinions here vary.

    I have tried various ways of taking the urso over the last 34 months and though I've not taken it all at night having tried everything else, I think for me, due to originally taking the final one of two urso I take a day later at night in the early days and suffering the most awful heartburn, I think that has a lot to do with it.

    I am of the thinking myself that urso is far better taken with or just following food. This is why I feel I couldn't take all the urso at night. With taking anything, your system starts to work up again in the digestive process and for me I do not tend to eat after the evening meal. I actually feel better as I'm then not going to be with a full stomach. That is how I feel though.

    I've tried taking all the urso at morning during breakfast but within a couple hours I started itching like mad, something which I do not do (night time itcher). So after several days I give up on that method.

    I think you have to find out what is best for yourself. I know for some if they are also taking other medications then another way could be better for them. (I only take urso.)

  • Peridots right,we have to just listen to our own body and decide our own action.Apparently it's not even been proven wether Urso is doing us any good or not but sometimes reading up to much on Pbc can become more alarming...I read last night it's know as the silent killer arghhhhhhhhh how horrible does that label sound???

    Just everyone look after yourselfs please & chin up & be safe x

  • I think if it's undetected it can be? We got to think that we're the lucky ones knowing.. In this case ignorance is not bliss .. There is so much money being ploughed into the research and as far as I'm aware they are breaking ground everyday...My specialist equipment even mentioned a drug being developed that heals the bile duct..

  • Don't know what everyone's views are on research that is being carried out with regards to PBC but I think the answer is in attempting to irradicate the antibodies that our system produces that could be the right way to go.

    Although the liver can heal itself not so sure about bile duct damage. I'm sure most of us would love to have something that could totally wipe out PBC in our system despite any current damage to the bile ducts. In most cases the liver would continue to heal itself back and with good care without PBC I'd certainly live with the itch as you never know, without the AMAs in the system we might not itch.

    I know one thing regardless I do not want to add further to the urso daily for the rest of my life. But if someone told me tomorrow I could pop a pill and the AMAs would be destroyed continually then I would as I'm sure once that was established then the liver and bile ducts would get that reprieve and I doubt urso would be needed permanently.

    Just some ideas....

  • Hi again Jpmac you dont happen to know what the name of this drug is do u?

  • No but I will ask.. back in 6 weeks time.. Although looking through previous letters it may be obetichholic acid which looking back we've chatted about on here before..

  • Thanks for both replies will do bit of searhing on net re the obeticholic acid but if you do find out the name for sure that would be great thanks milllion. x

  • Right there Universal44. PBC can be a silent killer if one never develops any symptons of PBC nor has it discovered quite by accident from a LFT blood test.

    I'm still sceptical about urso but....I continue to take it as I know that I'm almost 100% human again from what I was looking like in 2010 just prior to diagnose of PBC.

    I know myself despite my LFTs not yet reaching what are considered normal, there has been a lot of improvement since starting on urso Dec 2010 and though there is no way of knowing at any point if I can take that u-turn backwards, I just carry on day-to-day without really thinking about it as I just don't want to think about what could be when it milght never be.

  • Ha ha yes is it that obvious..

  • Hi Jpmac, I am also originally from the North East of England but been in Australia for over 20 years now. I came across Prof Jones when reading about PBC and had a DVD sent out here that he and his colleagues had put together - very informative and encouraging. They certainly have a lot of experience in treating this condition compared to most Drs in other parts of the world. You are very lucky!!!

  • Yes they are great at the Freeman.. I'm from Northern Ireland and moved to NE two years ago. . It's like fate.. My windows looks onto the Freeman couldn't be closer to the leading experts. . Lol

  • Fingers crossed then :)

  • Hi All, Interesting to read about your side affects taking 'Urso'. I have been taking urso for 4 years and just wish it had been available for my late sister. I now take the easy to swallow new dose 500mg x 2 in the morning with breakfast. Yes I have side effects but I watch what I eat...i.e....no cheesy dishes...no spicy food and whatever makes me feel nauseous, sick and gives me very bad stomach pains. On the question about Addisons disease.....It is in our family.....just another autoimmune condition as well as lichen planus, hepatitis, underactive thyroid and scleroderma to plague us.

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