Twill

I have recently been diagnosed with PBC and didn't know anything about the illness.

Two years ago I was told I had auto immune disorder but was never told how it could effect my liver.

The initial shock of finding out terrified me and I was upset for weeks.

Since then going online to find out what it is has helped me come to terms with the changes I have to make in my life.

I welcome all the advise posted on this site and am reassured there are others out there with the same condition that have lived for years and years with PBC.

6 Replies

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  • Hello Twill,

    Can i ask where about in the world are you and if you have already registered with the PBC Foundation? If not it is completely free to do so and can be done by visiting our website and completing the information or alternatively contact our office.

    As a registered user with the Foundation you will be able to access our Member's Section on the website where our patient's compendium can be found.

    This has a wealth of knowledge on PBC and has useful information from medical to diet, dealing with the itch and some ideas of what we can do to help us live with PBC on a daily basis.

    We also have our quarterly magazine that each service user receives and our Helpline service.

    Best wishes

    PBC Foundation

    Office: 0131 556 6811

    Email: info@pbcfoundation.org.uk

    Website: pbcfoundation.org.uk

  • Hello Twill.

    Besides The Foundation, you can actually request the free dvd all about PBC from Liver North. I got a copy several years ago now. I've popped the link on for their site.

    livernorth.org.uk/

    I was diagnosed with PBC Dec 2010 when I was 46. I started itching early on in 2010 at 45. I started urso at diagnosis and here I still am just over 5yrs on though it is not far off 6yrs since the itching began. For me in the early days I had itching 24/7 and also did have fatigue. At some point during 2011 the fatigue vanished. I get tired some afternoons due to broken sleep at night caused by the itch. The itch has lessened a lot since starting urso, I now only tend to itch later at night and through the night (if I am unlucky to be awake) and I tend to often feel the odd prickle during the day but nothing like it was during 2010.

    I did made a few changes but continue to live as normally as possible. I know there are a few things that I will probably never do again (sit through a film at a cinema, especially at night) but they are quite trivial. I am not far off being 52 now and have to say though my LFTs (the liver function test) hasn't come down to near normal in all this time they are said to be quite fine for one with PBC. I request a print out each time I have the bloods so I can see for myself but basically I refuse to read too much into them these days. Think it takes time for you to start getting on with life after diagnosis as the future can look quite uncertain.

    I think the future is still uncertain even now but I don't feel like I did back in 2010. My motto is to get on with life, enjoy what I can, make those memories and not think about what might be ahead with PBC as these things might never be so to me unnecessary worrying.

    I don't actually say I have an illness as such as looking at me no-one would know. I'd not even think I had PBC if I didn't itch. I don't refer to the urso as a medication either, to me it a supplement as after all it is a bile component that is being added to our system.

  • Hello Peridot

    Your reply was really helpful. There isn't enough info about how u can get the liver function test results to a better reading. I have started to make a lot of changes to my diet and I hope this may help.

  • Hello Twill.

    I somehow don't think we can do too much ourselves to improve the liver function test. I was never much of an alcohol drinker pre-2010 and after my first abnormal LFTs I chose not to partake anymore. I state alcohol because I am sure it may have some bearing on them rising in PBC if it was drank with caution. I am sure the odd glass though wouldn't be of any significance.

    I know there seems to be some mention of abstaining from smoking if you have been diagnosed with PBC but I can't say there. I've never been a smoker.

    I think the less chemicals that we are all surrounded with nowadays can have certain impact on the liver coping with them and to me the less stress that we can think of to impose on the liver must surely be of more help than not.

    I think the way forward in PBC would be to find some way of stopping the antibodies that we are supposed to have with this.

  • HI Twill

    Welcome to the group. I see you have already been given a couple of links one for the PBC Foundation and one for Liver North. If you are in America then you can find PBCers Organization through facebook or google it (The Foundation is also on FB) . There was a post on here the other day about a group in Canada as well but I cannot remember where.

    I was diagnosed around 10 years ago with PBC and am so very grateful that the PBC Foundation supports this source of information on Health Unlocked. The information I have had from medical people has been sparse to say the least.

    best wishes

  • Thank u all for the information given. I will keep following everyone's post, it's great to have support from everyone with the same illness and everything written is taken on board. Please keep posting and keep well x

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