New and Freaking out!

Hi RKAA. One of the main things is try not to stress out. Until its confirmed it could be a number of reasons for the rise.I am post TX and my Enzymes has shot up again it could be a number of reasons. Talk to your doctor and get more info and take it from there..take care.

Hi RKAA

I was diagnosed nearly 10 years ago. I am now retired and expect to die with PBC rather than because of PBC, It seems however that everyone is different, have different symptoms however many of the contributors on here like myself have a good life expectancy. I have been given Ursofalk. Diet does not seem to make much difference although I have reduced dairy produce. I have found that stressful situations cause my itch to flare up.

The PBC foundation is a good source of information as is LiveRnorth.

Hope u get to see your GP soon to get your confirmed diagnosis.

best wishes

RKAA,

In addition to Brummi's and ButterflyEi's replies, please read my previous posts about my mom's and mine experiences with PBC. I can very well relate to how you feel though, as two years or maybe three and that was when I was undergoing biopsies and all sorts of tests to out rule liver malignancy but yet to confirm non viral chronic hepatitis, I had a fit of sobbing in fear of a shortened life.

Luckily after proper medication I am now free of hepatic lesions and my liver functions are back to normal.

Apparently, PBC does not shorten life but somehow changes or slows it. I guess that is the case with other autoimmune disorders and which PBC is one. So, shake off the fear, get busy even if your body is aching or itching, but never allow your soul to ache or itch. For life is sure good most of the time, at least we try our best to make it so for others as well as to ourselves.

RKAA, great responses above. Do look back on previous discussions/ thread - they do help a lot. Try not to worry, speak to doctor and keep us up dated x life is good.

Don't automatically be too downhearted. I was diagnosed 10 years ago (I am now 64) - my blood counts are still high but had an ultra sound last August and they said my liver is still completely normal. Not everyone progresses at the same rate and some people have a dormant version.

Hello RKAA.

As Brummi states on here too, try not to look too much into it as there can be other reasons for abnormal LFTs.

I never received a figure for AMA (the anti-mitonchria antibodies) in late 2010 when I was diagnosed with PBC. I got a the consultant letter in print-out that he sent my GP at the time as he asked him to inform me I had PBC and to prescribe urso and in what dosage. My AMA just said, "a high titre" of the AMAs that he was making a diagnosis of PBC along with symptons at the time (itching and fatigue) and also abnormal and slowly continued rising LFTs and GGT.

I never really thought much about what I was going to be informed I may or may not have during 2010. I did read library ref books on the liver when the GP said he had deduced from bloods that it was liver-related and not a bone-realted problem (you can have abnormal LFTs with a bone problem) and also looked online. I did then see PBC but hoped I didn't have it. I never mentioned to the doctors about this but on my first visit to the consultant at outpatient hepatology clinic I did say was he checking for somehting like PBC on the day he said he would do antibodies tests. (I had a negative ANA result.)

I had about 6/7 weeks to wait from the antibodies blood tests to being informed I had PBC. I was informed at the time by the consultant that these tests take slightly longer than standard blood checks that we can all have from time to time like full blood count and even the LFTs don't take long.

Have you got a further appointment with your doctor? If so then it might be best to just sit it out and wait, meanwhile write any questions down that you might have for him/her.

It might sound a harsh thing to put about waiting but at the end of the day even though this is very important to ourselves in wanting to know if we have or haven't something or perhaps something else, I am certain that if you have something that is crucial to be informed sooner as opposed to a bit later then you would have been quicker. That is how I saw it back in later 2010. I know after I was diagnosed I couldn't understand why I wasn't started on ursodeoxycholic acid (urso) with a doctor's thinking I may have PBC but again at the time my LFTs and GGT must not have been of a crucial significance to perhaps warrant this? Aas far as I know only urso is used in PBC so maybe that is why doctors heed caution. (Urso was originally produced for gallstones which obviously those are ruled out earlier in the 'game'. I had a scan months prior to seeing the consultant.)

What I did in the period of waiting back in later 2010 was to look after myself even more than I thought I had been doing. Oddly enough when I received the print-out of all my bloods for 2010 at diagnosis I noticed that in the period of last having bloods done at the GP surgery (3mths prior to going to hospital) and then the ones I had taken with the consultant, my LFTs had actually come down a bit of their own accord naturally.

I do feel that once you know you have something you can start dealing with it and then try to put it to one side. I was 45 when I started itching early 2010, 46 at diagnosis and now I am not far off 51. I'm doing pretty good. I don't think about any stages of PBC. I was just informed by the consultant on seeing him after diagnosis that I had 'probably had PBC a few years'. I took that to mean it was quite new to me. Urso has helped bring down the LFTs and the GGT. I have recently had bloods repeated and a couple are slightly higher than they were 6mths ago but nothing alarming there.

I don't think about quality of life with PBC. I think that as we get older there might well be changes with us with PBC but for me I'll deal as and when as opposed to thinking about all that now. I want to enjoy life as you never what is round the corner. With PBC some of us might always remain roughly how we are now, majority of us will live out life with it and for a few it will alter not for the better but I personally don't want to think about the 'what if's' as this might never happen so needless worrying.

Hope you find out soon so you can start dealing with it all.

I am afraid, in answer to your questions, what we don't know far outweighs what we do know but I shall share a little of my PBC experience.

The oldest member of the PBC Foundation that I know was 103 when she passed. As far as I am aware, she passed away with her PBC and not from her PBC.

I, personally, have met people diagnosed up to 38 years (that is with AND wthout transplant).

I have known people who have been on stage 4 for years. (As an important aside, stage 4 PBC doesn't really exist: "stages" refer to degrees of cell change within the liver i.e. fibrosis and/or cirrhosis)

Quality of life is often determined far more by your choices than by your PBC.

I would ask you to consider joining the Foundation.

All the best,

Robert.