NEW TONIGHT X

[wendychalmers]

I'M NEW HERE TONIGHT... FEELING SLIGHTLY SCARED ABOUT THE NEW DIAGNOSES OF PBC MY CONSULTANT TOLD ME ITS NOT SERIOUS BUT I'M READING SERIOUS STUFF!!

[Hidden]

Hello wendychalmers.

It is scary being informed we have something that will never go away and currently be with us for life (unless some cure is found).

I was diagnosed with PBC December 2010 when I was 46. At the time I was informed by the consultant that my scan looked pretty much normal and he could see clear bile ducts. My LFTs (or liver function test, the bloods we have done) were higher than normal range, had been since I started itching intensely early 2010. I stumbled on PBC in a library ref book but never said anything to the GP as he was doing blood test after blood test to check for varioud things. I hoped it was a temporary glitch but was not to be. Started taking urso December 2010 and my bloods have come down but still not in normal range and not expected to with PBC. There is also another blood check (for liver infalmmation) known as GGT, mine is still above normal but all my bloods are said to be 'OK for PBC' still.

Can take some time for PBC diagnosis to sink in. You can request a free dvd on PBC from Liver North based in Newcastle, UK. You can also check out their newsletters online there and then. Also British Liver Trust has a leaflet on PBC on their website and of course there is the PBC Foundation.

It is said that most people live pretty much normal lives with PBC but no guarantees for anyone diagnosed with PBC. I decided myself long time ago now that I would deal with things as and when as these things might not happen and meanwhile would be needless worrying over. I get on with life, enjoy it as much as I can. I am now 53. I still itch but nothing like I did back in 2010 and 2011.

I didn't really change much dietarywise as I think I was doing OK pre-diagnosis. I try not to have additives in foods like the artificial sweeteners, food colourants, etc. I try to keep fat consumption low as we need bile to break it up and in PBC we can hav a compromised biliary flow hence the urso (bile component) that we are adding to our system.

I am pretty much active still. I have broken sleep nearly every night due to starting to itch late at night and it lasts until around 6a.m. I find being on the go as much as I can is one way nto to feel the prickles of the prelude to the itch. I tend to do a lot of walking and now gearing up for better weather being in the North West of England and our clocks altering tomorrow so lighter nights means a good walk round the local park early evening.

I expect your consultant might have used the terminology loosely as it is more than likely that you are currently in early stage of PBC as I was in 2010 (no idea of stages, no interest to find out, I go with how I feel), my consultant said he reckoned I'd not had PBC long. PBC can be categorised I am certain, for some of us it will never be serious, for others it might.

[Oidra]

Have you joined the PBC Foundation? You will get facts and

someone to speak to if you need to. Don't scare yourself by reading articles on the internet. Many of us lead normal lives with a few tweaks.

[Hidden]

Wendy how old are you and what Country are you in dear

[butterflyEi]

Hi wendychalmers

sorry to read of your diagnosis but welcome to the group.

I would have to disagree with your consultant it is serious but it may not be life threatening. I was dismissed by a specialist into the care of my GP who was lovely but it was not the right move. I believed that my diagnosis was not serious because of this so missed about 5 years of blood tests and continued on the same life style. In 2016 I had to change GPs but before leaving my lovely GP I asked for a referral to a specialist as I was having difficulty with the so called itch of PBC and she said "people like you should be under the care of a specialist". Great!

When I was diagnosed in 2006 the best bit of information that I read was that you are more likely to die with PBC than because of it and the lady of over 100 is a testament to that piece of information.

We all of us seem to be different with PBC but this is a great support network full of caring and informative people. Any questions ask away, no one is here to judge and if it is not something that any of us on Health Unlocked have experienced then the PBC Foundation can be contacted directly and if they do not know the answer they will refer to their medical advisers and get back to you. The PBC Foundation is free to join and has some good videos in their members section there are also back copies of the Bear Facts magazine where you can get good information.

Once on medication you can expect the same life expectancy that you would have had were it not for the PBC.

keep us up to date with how you are doing

best wishes

[GrittyReads]

I agree with Oidra, talk to the 'PBC Foundation' they host this site, link to their website at top of page. There you will find phone or email links to contact them. Also loads of good sound, up-to-date info on the site, and you can access more and get the PBC factfile if you join - it's free. It may help if you have all your letters and results handy, from your GP and consultant, that way they can help you understand exactly where are, right now, and what may be the next steps. Also, you can post on here - any time - with more specific questions as they occur to you.

Ignore most of the old and out-of-date stuff online, you will soon get to recognise what is worth checking and what is nonsense . The British Liver trust is good too, they also have a site, here on 'Health Unlocked' that you can check out, and do a good dvd on PBC.

Finally PBC is not necessarily the pesky condition it used to be, and steps forward are constantly (and currently!) being made in new successful treatments.

Take care, talk to people, enjoy life, avoid stress and keep on doing all that you love.