PBC - Recently diagnosed after 6 long years

Hi All. This is my first post so I'll give you my experience.  In late 2015 I was diagnosed Chronic Cholangiopathy which is similar to PBC.  My first symptom was itch on palm of hands and feet which then spread to my entire body.  After seeing several dermatologists with no results my GP did a full blood count.  It was then discovered that my LFT's were raised.  After monthly monitoring of these bloods for a year and them continuing to rise I was referred to Gastroenterology.  After seeing 3 different Consultants, lengthy waiting and numerous tests & scans I finally got my diagnosis 6 years on from my initial visit to my GP.  By this stage I was struggling to function on a daily basis, of working and looking after 2 children, due to fatigue, itch and interrupted sleep.

My consultant prescribed Ursodeoxycholic Acid and Rifampicin Tablets.  I will continue to see the Consultant regularly and will need biopsies to observe the advancement of the disease.

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  • Hi Auds5, you are the first person I have heard of having Chronic Cholangiopathy on its own, I had Ischemic C. as a result of a liver transplant which I gather is not that unusual, being due to liver damage of my new liver whilst it was out of the body and not therefore perfused with oxygenated blood, this causes bile duct strictures which can cause further bile duct failure (much like PBC for which I was transplanted for)

    you do not say what is the root cause of your Chronic Cholangiopathy ?

    keep in contact good health!

  • Hi PCBnPBC.  Thanks for your reply.  This is all new to me and have only seen the consultant, which diagnosed me, twice.  I've tried goggling Chronic Cholangiopathy but to be honest I'm no further forward.  However it was the consultant who told me to get in touch with the PBC Foundation and hence joining this forum.

    All I have been told is that its a Non- Alcoholic Autoimmune Liver Disease and that it is rare.  Little is known about the exact cause although environmental factors and previous infections are considered to be a cause.  Ive had pneumonia but otherwise was a healthy 31year old when my symptoms first appeared.  

    If yourself or anyone else has more info on this disease please feel free to share.

    Hope you are in good health after your transplant?

  • Hello Auds5.

    We can itch with any liver disorder apparently.  Not heard of what you state you have.

    I have however heard of something known as NAFLD (non-alcoholic fatty liver disease) and there is a leaflet about it on British Liver Trust.  I'll pop the link for their site as they cover other liver conditions as well as PBC.  There is also Liver North based in Newcastle (England) that discusses and gives information via their newsletters on other liver conditions too.  You might actually be better with one of these as opposed to PBC Foundation possibly?

    I think you might find that these other 2 have their own Unlocked sites where you may find someone else with what you have?

    livernorth.org.uk/

    britishlivertrust.org.uk/pu...

  • Hi Peridot.  Thanks for the links I will have a wee look at Livernorth as Im already signed up with the British Liver Trust. In my case Fatty Liver Disease was ruled out very early on. thsnks again.

  • Hi auds5,

    When my numbers starting going up they initially thought it was fatty liver disease. Then it was NAFLD. After 3 years under the care of my endocrinologist for hypothyroidism and 2 parathyroidectomies (removal of parathyroid glands - first op failed) I saw my liver numbers continually rise.

    I finally told her that something else was going on (wasn't she supposed to be telling me that???) I went to a gastro doc who referred me to a hepatologist at the Liver center in my state and was told it was PBC. Freaked me out - still does but I am living with it.

    The worst part was waiting to find out what it was. It's not something people run into everyday and in fact when I passed out from 2 drinks (before diagnosis - I stopped once I knew what it was), the hospital staff treated me like dirt as they though I was an alcoholic. At the time I was admitted I was not diagnosed.

    I did do a biopsy but that was because I was undiagnosed for several years and I am the kind of person that needed to know how bad it was. I took care of my mom first with cancer, then with Alzheimer's for over 20 years and I felt I needed that information. I found out I was Stage 2.

    So now I am on Urso 3times a day. Some itching - I thought not at first because what I read kept showing itches in arms and legs and i have it in weirder places like face, neck, palms - crazy stuff.

    I hope you get the answers you need. I have found a wealth of information here and people to relate with who understand the craziness  we deal with every day.

    Best, J

  • Hi Jiacheetah.

    Thank you for your reply, it was refreshing to read, as I can relate to the lengthy process of getting a diagnosis and needing to understand what was going on. I also encounter people who automatically think its an alcohol related disease and find this frustrating.  Because it is so rare and little being know about this disease it makes it harder for people to understand how it affects you on a daily basis. 

    I too am on 3 Urso tablets a day and it has eased the itch a little but like you have it in other places.  For me it is the fatigue that I struggle with the most and again a lot of people dont understand unless they have experienced it for themselves.

    Sounds like you have had a rough time so I hope your getting the care that you need.

    Take Care

    Auds5

  • Thanks auds5.  I'm doing fine. Like many others here i learned not to dwell on it everyday because that just eats up time you could be doing something else. I'm not perfect but I'm trying to accept what I can do rather than worrying too much about what I can't change. 

    I'm concerned about the tiredness so I moved up some travel plans this year. I am on my way to Las Vegas now with tickets to see Sir Elton John then it's New York in June China river cruise and Hong Kong in August and September and my sons wedding on November. I figured before the tiredness gets bad (or perhaps it will not who knows) I'm going to do some of the things I was going to wait longer for. 

    It's changed my attitude a bit  

    "Never put off to tomorrow what you can do today"

    Best, j

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