Just found out I have PBC and just started on ursofalk on Monday night.. I have been having bloods taken since Jan this year.. Still trying to get my head around it all and trying to understand what is going on.. Making change's with my diet but going around in circles trying to do to much at once I think..

I am so surprised with how many people have PBC😒

My doctor is not doing a liver biopsy yet going to see how this go in the next 3 months, hoping there will be a improvement😒

12 Replies

  • Yes there are rather a lot of us! The first thing to do is to join the PBC Foundation ( maybe you have done this already?) The link at the top of the page will give you the website. Then you will get the correct information and any help you need. PBC affects people in different ways and to different degrees. I am 74 and lead an active life but I do have everything crossed as I say this. I have never had a liver biopsy and would need a very good and convincing reason to do so.

    I hope things go well for you.

  • Hiya Oidra.

    Don't forget too there is a free DVD all about PBC available from Liver North. I got one a few years ago now. I didn't watch it all but my husband did.

    With you there on a liver biopsy Oidra, couldn't have put that bit better.


  • Thank you very much

  • Like you when first diagnosed a couple of years ago (now aged 46) it was a OMG moment. But give yourself time and educate yourself. Listen to your body and adjust according. I never forget I have PBC but its not something I worry about on a day to day basis.

  • Hello stevie1.

    If - that magic word! - I didn't itch at night or had to take urso I'd not know I had PBC.

    Me neither worries about PBC. Yes like everyone I wish I didn't have it but at the end of the day all I can is what I do now and just hope I'm as well as can be for years to come.

  • Thank you so much.. You are an inspiration 😀😀😀

  • Hello Shaz0000.

    I was diagnosed with PBC in Dec 2010 when I was 46. Started itching early in 2010 and at the time had fatigue that led to PBC diagnosis end of the year.

    I started on ursodeoxycholic acid (urso) 600mgs per day. My bloods (the liver function test (LFTs) and the GGT) have slowly started to come down after a big improvement in the first 12mths of taking the urso.

    I think it partly depends on how you find out you have PBC. For me I was having a look in library ref books and also on the internet mid-2010 after blood test after blood test kept showing up negative for certain things after my GP calculated I had a lover problem as opposed to a bone problem. I stumbled across PBC and read a bit about it. I never mentioned to the GP as quite frankly due to working long hours in a full-time job, taking it home with me and having a pretty hectic life at the time, I hoped it was this that was causing it all.

    I asked the consultant at the hospital on my first visit beginning November 2010 if I should change anything in my diet given I had at the time undiagnosed PBC. He said to continue as normal as it sounded like I was eating pretty well and he added, 'the liver loves calories'.

    I had the odd drink at special times before my first abnormal LFTs and after that I didn't have any alcohol. Never been much of a drinker so hasn't bothered me.

    I took even more notice of certain things in foods that I used to not have if I could avoid, artificial sweeteners and MSG for eg. I prefer to make my own food so I know what is going into it. I have the urso twice a day, 2 at morning (I have 150mg tablets) and 2 with the evening meal. Have experimented in other ways but find this for me seems better.

    For me the itch has remained, the fatigue vanished at some point in 2011. I feel pretty much great but get tired in the later afternoon sometimes due to broken sleep due to itching. The itch used to be 24/7 in 2010 but over time it settled somewhat and I now tend to start feeling prickly anywhere on the body around 7p.m. and then by 11p.m. I do itch. So far I've not really had any further symptons that you can get with PBC.

    I cut down a bit further on fat intake but I have never been that partial to fry-ups (never liked bacon for eg), fast foods, etc so again that isn't a problem for me.

    We do need some fat in the diet for the absorption of the fat soluble vitamins that we can have succumb to a problem with. I utilise the sun these days too as we need Vitamin D that we can also find ourselves lacking.

    I was diagnosed with 3 factors for PBC, I had symptons that can come with PBC, abnormal bloods and I was found to a high titre of AMAs (antibodies) that correlate with PBC. I am in the UK and this tends to be the norm but if there is any doubt of a diagnosis you are requested to have a liver biopsy.

    A biopsy is said to be able to stage PBC but I don't go in for that. I think it could be known how I am doing with scans and bloods and further symptons.

    I wasn't sure I'd be around 5yrs down the line after being informed I had PBC but I decided after going round in circles in the first year as that to me looking back was tough. I choose to get on with life, enjoy it, do things when I can and I find I dont' want to know how PBC can turn out, I'd rather deal with things as and when. These things that PBC can lead to may never do so and to me that is needless wondering and worrying now and wasting my time. I think once you reach a year and then another and so on you start to feel a lot differently if you are pretty much on an even keel as I am currently still.

  • Thank you.. My bloods have came back the same as you have described. I am having more blood test each month for the first 3 and then 3 more months after my visit to the gastroindrolist. See if there is a improvement.. I would luv a good night sleep with no itching.. Thanks for all your replies

  • Hello again Shaz0000.

    I hope that for you the urso settles or even manages to eradicate the itch for you. It is just awful. For a select few with PBC it appears that once on urso the itch can vanish.

    Would love you to report back say when you have received your next bloods and know how you are fairing with this PBC lark.

  • I sure will thanks

  • Hi there, I was diagnosed 12 years ago, I've never had any symptoms and half the time forget there is anything wrong with me. You can totally lead a normal life with PBC, I hope you do too.

  • Hi Debbiem40

    Your experience with PBC shows how we are all affected differently. Similar to you I was diagnosed 13 years ago and slowly over the years my tiredness and itching got gradually worse. Things got too bad and I had a transplant toward the end of last year. Thankfully I am doing well now but what a contrast to how PBC effects you. I certainly could not live a normal life like you with PBC.

    Good luck !

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