PBC Foundation
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Is my consultant right?

I was diagnosed with PBC about 4 years ago. My consultant says all my bloods are in normal range so I shouldnt be experiencing the itching or terrible tiredness that I have. They feel very real to me and I am struggling a lot with everyday life. Can you have these symptoms even if your blood results are ok?

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yes , my bloods are fine but I still experience the symptoms

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Agree with catherine69, alhw.

If you are on urso now as I presume you are with being diagnosed PBC then your bloods have probably decreased to what you say are in a normal range due to this.

I originally started with the itch in 2010, that is what prompted me after 2mths to visit the GP and from there, eventually got the PBC diagnose some 8mths later.

Altho' the consultant I saw at the hospital after the diagnose - I had the AMA blood test which is positive, the ANA was negative - said that the itching 'should improve with urso, I have found it has but not altogether gone (just had 8 days of virtually zero itching and last night, was an irritation thru the

night).

Altho' my bloods are outside the normal ranges still (they have decreased over time with urso) my theory is that the itching may never go away due to the fact that if a cure was found tomorrow, the bile duct damage would still be

there regardless. Even if any of us are lucky enough to go into a sort of remission with PBC as it can apparently occur, we will still have a bit of a compromised liver.

Not a happy theory but I too share the itch.

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I agree with the others. Your bloods might have gone into the normal range but you still have pbc. So still get the symptoms.

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My blood are up and down all the time. I am not on urso and I still have the itch & other symptoms.

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I was reading an article last night ( in fact a few of them) about the side effects of urso and the side effect match all the things that PBC is supposed to cause, I am very confused at the moment and did infact cut my urso down to two yesterday and felt a little better as I didn't get the bloating or indigestion / gas that i have been having everyday so not having anytoday and will see how I feel.

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I am interested to read how many are on Urso. After extensive research I refuse to take it because of many ethical and moral reasons. Just to share this knowledge, A number of research papers I have red show that Urso dosen't improve a patients outcome any more than if they choose to take nothing. The cost of this drug is exorbertant, here in Australia it is around $500 @ month. But the most overridding reason I have chosen not to take it is, how it is produced. It is extracted from living bears in the Phillipines and elsewhere who are kept in tiny cages soley for this purpose.

Instead I choose to follow Dr Sandra Cabot a GP and Naturopath here in Aust who now specialises in the Liver. I used Livertone when I was first diagnosed and it bought my LFT's almost back to normal and they have remained so for 2 yrs.

Just additional info for all to read.

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Hello toohey.

I also read some research paper regards urso and like you have been wary all along as if this is the path to take with PBC.

I was sceptical as in the 6mths before I got a diagnose I tried to change things that would relieve the liver as I had abnormal LFTs. I stumbled across PBC online (the Foundation) and read but at the time didn't take it overly-in as really thought there was nothing much wrong with me. Until the hospital doctor said he was doing the antibodies blood test I had an idea it would come back positive somehow.

BUT it took me 2mths after those tests to be given the PBC diagnosis and it was only then that I got print-outs of all the bloods I had in the previous 8mths. I noted on those that my LFTs had actually started to decrease before I had the AMA (and ANA) blood test so I must have been doing something to aid myself before the urso.

It seems that urso can do one thing (ascites is one that they can help avoid) but for some it is a case it just has no difference at all. I also read that results can start to flag after being on urso 12mths which mine have slightly but no-one seems to fill you in here.

Not sure about how the bile is extracted but as far as I have read the modern tablets altho' orig based on bear bile, it is replicated in the lab. Sure the PBC Foundation has covered this article at some stage so maybe someone else can fill the gaps there.

Likewise I have my views on animal experimentation also and they are not in favour of such either.

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Thanks for all you answers.

toohey, I must disagree with you about the Urso. It is made with synthetic bile these days.

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I researched Urso, as I thought I was going to be physically sick when I saw the bears in the cages, the urso we take are synthetic :)

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your doctor is full of hooeey, my labs are within normal range for the last 6 months or so because of urso and i still have some itching and massive exhaustion, especially after a full day at work. Why do they all think they know how we should feel?

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Hi because my bloods are normal my consultant thinks my itching, tiredness and muscle pain is nothing to do with the pbc ,i still have to keep popping the urso as it is this that is keeping my bloods normal .Also urso is now a synthetic bile and is not extracted from bears.:)

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poppygayle....I think we may share the same consultant, last year during a check up I told him my symptoms, he said defo not pbc related, even the the symptoms on the pbc foundation leaflet he said were not symptoms, he said to me, I think you better go see your gp :o after that decided not to go back

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I am on urso and it took 3 years for my blood to stabilise to a good level. I still have the itch at night and sometimes if I eat chocolate, but I never specially eliminated foods, I just noticed when i ate it I itched more. I also have bad fatigue. I am on sertraline (which was chosen by my consultant) for the itch which had improved to some degree.

My doctors at the gp surgery no nothing about pbc and because my blood tests improved one gp in particular thought I was cured!

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As far as I know, once you have PBC, you will always have PBC (we just have to manage it as best we can). The symptom of tiredness seems to be the most common denominator between us all with the itch coming a close second, regardless of our LFT count!!!

There is still so much to be discovered about PBC and that is why the research programmes are very important and raising awareness of the condition. Hopefully the scientists will discover something to help us out and also help doctors understand what it going on! Knoweldge is power.

I think I remember reading somewhere that we won't die from PBC, it will die with us.

Keep as well as you can. x

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I don't think my specialist believed me when I told her I suffer alot with fatigue because she said my bloods were fine. I get fed up of people not believing me especially Doctors.

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No-one trully knows what goes on behind closed doors when we all look so well. No-one see you when you have to take an afternoon nap or go to bed at 8pm when you cannot keep your eyes open another second.

I can kind of understand where non medical people are coming from. However, with regards to your doctor, she should at least know the main symptoms of PBC and support you. I would be tempted to give her a copy of the leaflet specifically aimed at doctors that you get from the PBC Foundation. I am sure you can print it from their website. Good Luck. x

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Well I finished my wxsperiment with urso the days I stopped taking it, I had no itching, no tummy upsets, was not as achy ( joint wise ) and I could eat, yesterday I started them again, I took 1 in the morning and one in the evening just as I was going to start my meal, before I had taken one mouthfull I was bloated up and sat with my head over a bucket, I think I am going to ask to be taken off them as I think they are making me worse, I must just be one of those people who has the urso side effects. I havent taken any yet today and feel as good as it gets.

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Just to agree to one point...

It is generally accepted by those who are expert in PBC, that the symptoms are NOT always indicative of the stage or severity of liver damage. They just do not know why the symptoms are as they are!

There are people who itch right from the beginning and some who do not itch even in advanced liver disease. there are people who are fatigued even before diagnosis in early stage disease and others who have no symptoms right up until end stage liver disease. This is just a case unfortunately of a doctor not understanding the nature of PBC.

As for Urso..... we have to be careful what we read, or misread!

As others have said, Urso was originally created from Bear Bile but is now a synthetic version of this. As for improving outcome, Toohey, would you be prepared to share the research you have read? The thing is, Urso acts in several different ways and they do not know all the mechanisms involved in why Urso might help in PBC, ( but one thing for sure, is that when damage occurs in the bile ducts, and scarring occurs, this can cause bile to become back logged in the liver and bile acids also seep into the liver tissue. It is this mechanism that can cause damage to the liver. Urso works on the bile to dilute it... sort of makes it smoother and less sticky. So it can flow through the ducts easier, carrying harmful toxins with it! That's why it can normalise blood tests because many LFT's show abnormal due to the irritation and damage caused by the bile getting back logged.

Urso is said to have few side effects so the benefits are said to outweigh the possible side effects. It is NOT a cure for PBC as PBC is an auto immune disease, Urso doesn’t work on the Immune system. We have to remember why Urso is given and what it does.

As for taking 'natural remedies' or tonics, I can not speak for Australia but here in the UK, the law that governs all herbal remedies and tonics says they must be labelled as food supplements. The reason for this from what I gather, is that there is minimal testing with herbal preparations, certainly not the years of research and trails that go hand in hand with medicines. Often these preparations can differ greatly from each other, they can contain different additives, and fillers. Simply testing isn't in place to ensure the purity of any such products. As many of out most potent drugs are based on 'natural' products, we should never underestimate how potent they might be! Without full and proper testing, we just don't know what we are consuming!

I can understand the cost, it is shocking the cost of these drugs in some countries. We in the UK are very lucky with our NHS. But whilst this cost might make Urso prohibitive for some to take, Urso is still the best choice available to help prevent damage. We have some amazing docs and researchers working day in and day out here in the UK Looking at PBC, how it works, and how Urso is helping. I would really want to see the same research for these tonics before I was even remotely tempted to jump ship!

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