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PBC Foundation
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Diagnosed by liver Biopsy only a mild case at present the Doctor said

But no Info on what I can expect, what I should do or eat to keep healthy.

I had bad shivers , hot sweats fatigue , achieve all over for about 6 days and my already raised L f t went very high , is this a part of the symptoms ? They took out my Gall Bladder that had stones in it at the same time as the biopsy and I have had much more energy since.

Any advice. Confused

8 Replies

This is how mine started I think, I went to see my GP because of very bad sweats, bad shivers ( so much so I used to visibley shake) from the inside, it was as though I was going into shock, one thing that happend with these shivers was my nipples went that sore I could not stand any thing near them, at this point I used to lie on the floor in front of a fan heater, the shivers have now subsided hopefully, But the joint pains are going worse, I woke this morning whishing i hadn't and have had to take painkillers ( which I don't like doing) its that bad. to be honest it does not seem to make a difference whatever I eat. The only info on what we can expect is on here and from the foundation as far as I can see.


I'm not so sure if this is part of the symptons of PBC myself.

You might just have had some fever from something else as feeling hot and cold can normally happen with that.

I think sometimes we can think it is due to PBC but it can be something entirely different. Hope you are feeling much better now.

I know last yr the GP asked me to go in and I knew why, the full blood count was just one point below the normal range as it has been for a couple of yrs basically as I looked thru the blood results from 2010 to see at the time.

I did find out about this as it is on the Mayo Clinic site (I am not in US., I am in England by the way). Apparently it can be normal in women in particular to have a normal range just a tad below what is considered normal on the scale. I think that is me and mentioned it to the GP who at the time went on about it being perhaps something else as I also had a slightly lower ferritin count. I explained that altho' it might not be due to PBC it could well be a case that with PBC being liver-related* my liver was perhaps struggling with iron which is possible. With a compromised liver or biliary system surely certain things have a bit of a knock on effect and can contribute to other things.

(* I say liver-related as PBC as we know starts with the bile ducts under attack and it is these leaking bile ducts that cause bile to irritate the liver.)


Thank you for your reply, when they staged me after the Biopsy the Consultant asked me to go on tablets to slow progress up but as I have this in a mild form I am not convinced I should start taking medication yet or am I wrong should I start medication sooner rather then later , what do you think?


Hey hotshot, i saw my consultant a few months ago who said my bloods wernt too bad . i am lucky that at present i dont have the itch , but get so so tired. the consultant said that the urso wont help with the exhaustion and as i dont have the itch and bloods not too bad no need for meds? i am going to see another consultant at kings next week as my consultant referred me there after i refused a biopsy. not sure if i will be treated any differently but at present it feel like im just coasting along. my consultant did mention urso, but when i asked if i really needed it he shrugged his shoulders. yeah great help lol. anyway i will see what kings suggest and let you know.


Hello again Hotshot.

I think perhaps the consultant has suggested you take the urso as your bloods have perhaps reached that range where urso is permissable?

Tho' I can't say why it does appear to be that way with regards this suggestion to me. What I'd do is ask for your blood results currently and then if you decide you will take the urso at recheck of bloods compare.

At the end of the day it is your decision whether to take. For me I did come to feel after 7 months that I definitely must have something wrong with me back in 2010. After having the itch for almost 8 months and then being informed that the AMA test had come back positive and I was diagnosed with PBC altho' I wasn't keen on taking a tablet that is apparently for life, I reckoned I'd give it a go though I am sceptical. It was after my first blood test about 2mths after starting on urso that I saw the figures had altered in a good way so I continued taking the urso.

I think what your consultant is probably thinking is that you do have PBC but at present it is asymptomatic which means you have no symptons but if the PBC was to continue without the addition of urso which is a bile supplement then maybe your liver could start showing strains of PBC earlier.


Hi Hotshot, I saw a hepatologist that specializes in PBC. He did his internship yrs. ago, under Dr. Gershwin, the "guru" of PBC. So, he told me that even though the biopsy shows nothing, but I do have elevated ALP & positive AMA, I should start immediately, to hopefully slow progressionb BEFORE any liver damage occurs. He told me that quite frankly, there is nothing more any doctor can do, but prescribe Urso, & hope/pray that I am a responder. Even if a person does respond, it does not mean that one day, the Urso may stop working, so start now.


I stopped taking urso for about qa year and my bloods went quite high. I have been back on urso again since last December and everything has come back down to normal range.


Thank you all for your information , I think my Doctor and consultant probably know less then you guy,s about this illness.

We are all at different stages and have varied symptoms so it is difficult to try and work out what is best for each one of us , there is no set patterns to follow. A leaflet with varied symptoms , advice on how successful the treatment is and how quickly it can progress without medication would be a great help from these Doctors who do not have much insight into this condition.

Who would you say is the best consultant to try and see, I need consultant that has an interest in the condition . I live in Hampshire U k but would travel any where in the U K to speak to an expert.



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