Just told I have PBC, also just read where ... - PBC Foundation

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Just told I have PBC, also just read where the name changed

DeeSree profile image

Funny since my doctor called it PBC before the name using the word cirrhosis.  Glad to know there is a place to come and read info and others input.  I am scared to death about this and have had symptoms for years that no one could or would look further to find what was the cause.  Finally after complaining that I have had elevated Liver functions for about 9 yrs two ultra sounds on my liver not showing a fatty liver.  I said, well something is wrong if I have these elevated tests and there must be something else to look at.  How simple was the blood test AMA and ANA that my gastroenteroligist  finally said we needed to do.  Then a liver biopsy, funny how they told me it was to stage it and yet when I asked my doctor what stage he said they didn't stage it.  I just picked up my meds Ursodiol today.  I am also low on vitamin D and taking large doses, and calcium too.   Lately I have been having the worst charlie horses in my thighs (never had that before) so I am happy to have found this site.  I also heard that since it seems to run along siblings and usually sisters.  Will be telling my sister in a few days she might need to get tested.  I originally heard this was not hereditary yet mitochondrial DNA is the maternal line.  Mostly found in women of northern european ancestry.  It is a very confusing disease.  Thanks for being here and listening.  Dee

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Hidden profile image

Hello DeeSree.

I am in the UK and back in early 2010 I started to itch almost 24hrs per day.  After a fortnight of having to stamp my itching feet at work and struggling to sleep at night due to it, I took myself off to the GP.  He thought at first allergy related and prescribed Piriton.  I knew you could buy it over the counter at the chemist so checked what he had written and despite not wanting to take (as I'd not had a GP prescription since 1999), I bought but 2 days of taking just made me feel sick and of course it didn't alter anything.

The GP then had me make an appointment for bloods (probably could have saved time doing them there and then himself but I'd to continue itching and wait over a week to return for the bloods being taken - the wheels of the NHS turn slowly).  The bloods came back showing higher than normal liver function test (LFTs) and from there on he started taking further bloods at intervals to rule this and that out (Wilson's Disease that is copper overload, Hepatitis, etc) to find them all negative.  There is even a blood test that can determine if liver or bone related as bone issues can raise the LFTs.  I did once find some NHS Pathway online and the GP followed that to finally make me an appointment at hospital.  He sent me for a scan (ultrasound) several months after starting bloods and it showed pretty much up normal, liver and surrounding organs.  the hospital first appointment took 3 months to come around and meanwhile the itch went on.

The consultant that day after talking and prodding my torso and going through the scan said that he was going to do an antibodies blood check first of all.  It was the AMA and ANA..  2 months later I was to be informed I had PBC due to having a 'high titre' of AMAs, the ANA came back negative.  So December 2010 I started taking urso.  I am under the impression that in the UK the antibodies test has to be undertaken by a consultant.  I know it was the consultant who set the mgs and authority to the GP to prescribe the urso.

I do have the view that some who are experiencing certain symptons that may point to them having PBC, in some cases it can mean that they have some other liver condition.  PSC is another auto-immune and opposite of PBC where it tends to affect mainly men.  It seems that anything we can have that causes a compromised biliary system thus affecting the liver can give the same symptons.  I know when I was having the antibodies test, the consultant did say that it doesn't go for testing via the normal blood route and takes a bit longer to come back.

I've never been requested to have a biopsy nor would I agree.  It is apparently to get some staging but to me the liver being a large organ there is doubt as to whether the biopsy site is an accurate picture as the liver can be damaged in one part and healthy in others.  It can apparently give a diagnosis of PBC though due to cell changes that are throughout the liver.  I've no desire to know whatever stage I am supposed to be in.  Know that when I was diagnosed the consultant on my first visit back after diagnosis said that it had probably started 'a few years previously'.

I have no desire either to know of other family members who may or may not be at risk of PBC.  I say this because I think sometimes we can worry about things unnecessarily.  I would never have known I had PBC but for starting to itch.  I would never have found out unless I ever had a liver function blood test if this would have been the case.  I did at some point think maybe my late gran had PBC but then thinking more I realised she more than likely never did as I then recalled her having blood checks several years before she died and there were no issues.  My own mother died aged 43 of nothing related to liver but I'll never know if she might have gone on to develop it as I was 45 when I started to itch and 46 at diagnosis.

DeeSree profile image
DeeSree in reply to Hidden

Thanks Peridot, I can understand not wanting the liver biopsy and I too was totally against it.  (they said, we need to check for scaring, well won't the needle cause the scaring if its healthy) However, I sought a new Gastroenterologist to get a second opinion and when he said, we will never know for sure that is it until we do that biopsy and learn more.  I finally agreed.  Mine was done under CT scan so they could be much more accurate than ultra sound one.  ( I was glad about that afterwards too).  I have had so many issues over the years that some thought I was a hypochondriac, even I was believing I was too.  I knew I started having digestive issues when in my 20's,  told it was my gallbladder in my early 40's that was causing my pain.  So it was removed and since then my LFT were elevated.  I did have some gallstones when they removed my gallbladder so I assumed it was that as well.  Only three days after surgery all my symptoms returned.  Oh well, glad to know that there is meds for this and I am planning to get the copy of my tests next week to read for myself.  My doctor was amazing and told me I was going to be ok and to quit worrying.  I too wondered if treating without the biopsy would have been a better idea and chose to do what I was told by two different doctors who are not in the same practice or hospital groups.  Now I will start the meds today and pray it doesn't have many side effects that will cause me issues.  I have very sensitive stomach, have had itching in my upper back for years as well.  Hope others who find out this is what they have find this place to talk and share with others.  Does anyone know what I should not eat, or what I should eat when taking the meds? (its says take with food) 



Hidden profile image
Hidden in reply to DeeSree

Hell again DeeSree.

Are you in the UK then? Just the mention of the biopsy, I know I'd not be convinced to have one when I was diagnosed. I think a lot of doctors being curious want to find things out for themselves and this can often be the case. Not saying it is a bad thing but I do think that unless there is any doubt as to whether a patient has PBC in our case then it shouldn't be necessary. In the past a biopsy was the only way to diagnosis apparently but then along came this antibodies test and for a lot of us the biopsy was then deemed unnecessary. I'm also of the thinking if not necessary then why puncture the liver that is being compromised plus there is of course the risks in having one.

For me taking the urso back in December was my biggest disappointment as prior to 2010 I had not taken any prescribed medications for 11 years and always avoided any medications or even a pill if I had an headache unless absolutely necessary. took me some time to accept I had to take urso day in and day out. I still don't like it but take it.

I think I'd be wrong to say in my case it hasn't caused me any temporary side-effects as in the first few months I felt bloated, became constipated which I had never prior (some experience diarrhoea) and developed heartburn. I started taking the urso at half dose (I am on 600mgs daily) with breakfast (that tends to be a cereal with milk) and then I was taking the final half around 9p.m. I used to take it with a half cup of tea and a couple of dry biscuits. Found it worked OK for me. I've experimented over time and still find this is the best way for me. I did think t he itching was a bit worse in the early days after starting on the urso but then over time the itch has altered so much so that I tend to itch at night and the downfall is it often causes broken sleep.

I say regarding the urso causing the itching to get worse as trying it various ways (I did read in Bear Facts a few years ago that it was OK to take the lot in the morning and some take the lot last thing at night), in 2014 I did try taking it all in the morning but a couple hours later I started to itch badly so abandoned that after a few days. I never itch on half dose at morning. I think it depends on the individual as there doesn't seem to be a set rule for taking the urso.

The one thing that I try to do is to not have too much fat in my diet. We need some for the fat soluble vitamins but I don't go overboard with fatty foods at all. Moreso because bile is supposed to act like a detergent on breaking those fats up and in my opinion the more fats we consume the more bile would be required and then after it has been used it has to be taken care of and it is thought that used bile causes the itch. I think this is why some days we can itch less and then other times a bit more.

DeeSree profile image
DeeSree in reply to Hidden

I totally agree with you on the biopsy part and now that I realize that the test was probably enough especially when they said, they needed it for stage. However they didn't give a stage. I take 500mg 2 x a day. So you are on a low dose compared to mine. I was told however it went by weight. Right now I am about 15 lbs overweight. Hoping to lose some of it watching my fat intake. I have already been itching before i found out so not sure if the meds will cause me to itch more or not so far I have had 3 doses and its hasn't shown any side effects yet. Hope I do not have any.

DeeSree profile image
DeeSree in reply to Hidden

OPPS not not in UK in US Kentucky

Hi Deesree

It was the same for me. Bad bloods for 3/4 years, normal scans and then one day I insisted that something was wrong and was sent to another doctor. It took another 9 months more blood tests, an elastography, which works like a non-invasive diagnosis then finally a biopsy.

I was told I was already stage 2 And for awhile I was very angry.

I started urso right away and it brought my numbers down. I'm moving on with my life. I already have osteoarthritis in my fingers and hypothyroidism so I'm hoping nothing else pops up.

Best, J

DeeSree profile image
DeeSree in reply to jiacheetah


Glad like me you are finally getting the answers we wondered about so long. So far no side effects from the Urso and that is a plus for me. Part of my complaints are probably from my normal aging since many of my friends are also complaining of the same things. Hang in there we will just move on with our lives.


Hugs ... I know it's scary - I was diagnosed recently too... This is the best place for you to be :)

DeeSree profile image
DeeSree in reply to Becca75

Thanks for your kindness. Sorry it took me a bit to answer I am at the same time of diagnosis was undertaking a huge life change, selling my home of 24 yrs and possibly moving to another state. I live in the US my home sold in 3 days so I am packing frantically now to be out. I am happy to have found this place.

congrats on your new place and selling your house so quickly! wow that's awesome :) Don't be sorry - life is busy. I'm here :)

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