Hi everyone, hope you all had a good Christmas and new year.
I luckily have felt well all Christmas and still remain symptom free apart from today where I've had some aching in my liver area which is also in my right shoulder. It is only very mild and is more of a niggle than a pain but I'm wondering if my liver is becoming more inflamed which is what's causing it?
I had a biopsy 3 weeks ago and didn't even know where my liver was till I had this done. It's the same ache I had when I left the hospital so could it be related to the biopsy still?
I've had to wait all over the Christmas period for my results and won't get them till Jan 11th which I'm absolutely dreading. Suppose I'm still hoping prof Neuberger will tell me I don't have it but not much chance of that.
My concern is because I feel well I don't want to take medication (urso) which will make me feel unwell.
Sorry to waffle, any feedback gratefully received x
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Bellalou10
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just a quick reply. Unable to make comment on liver pain. However can say I have been on Urso for some ten years and been fortunate not to have side effects from it.
Hi Bella , I have pain in the Liver now and again, I was on urso for 2 yrs, took myself off it in May2014, but my Liver worsened after stopping it, so now back on it , and will be monitored each month, The reason I stopped taking it was spending over half the day on the Loo, and slowly becoming a recluse ,This time though I have cut out other stuff, in foods and drink and im ok up til now, think what you eat and drink plays a big part in how you feel , , Stay well , and a happy new year, Mylo2 .
Hi. I was put on URSO 500mg a day but my doctor upped my medication ton750mg a day. This completely took the itching away. I don't have any side affects but I strongly believe that the food and what you drink makes a huge difference in how you feel. I have eaten very healthy and then not too healthy and can see a major difference. Stay positive.
Glad that you found the itch vanished when your urso was upped.
I was naughty some time ago and took a bit extra of the urso for awhile just to see if it made a difference mainly to the bloods (improved them more that is).
I was prescribed 600mgs at diagnosis and remain on that. I took 750mgs myself but have to say all it did for me was make me itch even more and during the day when all I often feel is the prickles as the itch for me comes after 11p.m. at night (unlike year of diagnosis pre-urso when it was 24/7).
I think in my case the urso causes the itch but with improved bloods the itch is being dealt with but at the same time the itch doesn't subside as it is partly due to urso as it can occur as a side-effect (pruritis).
I have experimented over the last few years with the urso regarding when and how to take. I found that if I took it all in one go with breakfast later on in the morning the itch came and it was pretty bad, so much so that after a few days I went back to how I take it normally, twice daily. I have tried taking it 4 times per day (as I was switched to 4 x 150mgs a couple years ago as the 300mgs were withdrawn) but for me tends to be a case of remembering, find better twice daily with breakfast and evening meal.
I have cut out fatty food & eat as healthily as I can & I am fine with the urso. I do get an ache some times it comes & goes. As does the itching . if you have it confirmed with your biopsy you must take your urso. It's they only thing we have at the moment.
I have found that since taking urso my pains have subsided. Iam also pretty much symptom free so far apart from the pain in my side. I am also following a PH diet less acid and more alkaline foods. Some believe this is the key to healing your body. This is a useful blog that may help. cupsofgreen.tumblr.com
Iam a big believer in you are what you eat so worth a go.
I agree with the others. Take your Urso and try and cut fat from your diet. I've found that salt is a big no no for me. When I eat foods with hidden salt my legs erupt in sores and itch like crazy! Take care what you put into your body and the liver will have a better chance .
Though I am no doctor or dietician CathieG, I somehow don't think it would be advisable to cut out too much fat in the diet.
I say this has it has to be remembered that fat is needed for absorption of the fat soluble vitamins, one being D that we can find ourselves deficient in PBC.
I've not added salt to my food I have been cooking or eating since I left home back in the early 1980s. I think we don't need the addition. Certain foods have natural sodium and certain foods we buy have the addition already, even breakfast cereals.
My motto is to try and eat foods that are more natural and without unnecessary additives. I cook a lot of my own so know what's going in to what I eat.
Hi, I don't think it's possible to cut all fat from our diets, not only because we need some but the amount manufacturers put in it! I certainly felt the difference after cutting down on fats. We are all different but it's good to share what's worked and what hasn't.
I didnt feel urso made me feel.ill if anything it seemed to help wiyh excess stomach acid i had . Of all the tablets i take it is the only one that gives me no problems.perhaps im unusual and i did already have irritable bowel type symptoms so perhaps thats why i had an improvement.! Just remember that urso had can slow or halt the progression of pbc and you may not end up with any symptoms.please dont be too concerned about the urso a lot of people get on with it fine.good luck with diag.x cazer.
Hello Bellalou10.
I don't get this 'liver pain' (diagnosed with PBC Dec 2010, just have the itch currently) but there is a nerve that runs down that side of the body and it is said that during a liver biopsy at the point of needle impact patients can feel a sharp pain in the shoulder so maybe it is due to the biopsy. I've never had a biopsy (diagnosed with certain criteria) and being in the UK not standard even after diagnosis. (I'd not have one now if it was requested.)
For me taking urso over 5 years now I can't say that it has made me 'unwell'. There were initial side-effects in the very early days but these vanished. I was symptomatic when I was diagnosed and urso is the usual course. The itch has altered for me over time and the bloods improved. I know if I didn't itch I'd not know I had PBC.
Hi I have been taking urso for 4 weeks and have not side effects but over the Christmas I have let my self go a bit and I noteds that I had a little bit of a itch but I think that is because I had some sweet things and did not follow my low fat diet. I think some time we all should have I little bit of somethink we like. So l eat health l do a low fat diet as best as I can and feel good for it . I have lost 2 stone but still I have 2 more to go but will get there in the end . I am now starting to live my life again and as normal as I did before . I have my liver scan next Monday in which I am very scared about it as worrying what they will say to me.
But would like to wich you all a very happy new year and a healthy one and to thank you all for you support 😀
Thanks for your message, that is really interesting because my twinges only began when I didn't eat so well too over the Christmas period. Since being told pbc is more than likely what I hace I've completely changed my diet around, drink nothing but water and I've felt great, not a single symptom of having Pbc. When I fall off the wagon food wise I've experienced the twinge in my liver and a tiny bit of itching today although it's sharper than an itch and more like a spike. I'm gonna get back on the low fat etc and see what happens. I too and terrified to get my biopsy results although this has been going backwards and forwards for a year with apps so time to sort it out I think. I'm glad you don't get any side effects that's good to hear. Happy new yr to you and good luck with your scan xx
Forgot to say i get the ache in side and have done for 17years ...have been told its common.i sometimes sit witj my right arm up above mg my head..restimg on sofa ha ha this helps!!!but its not a terrible pain anyway just annoying.xx
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