Confused

[Leighton56]

Hello, I'm 57 and I have been diagnosed with PBC, I'm also a Diabetic of 2 yrs and a Depressive of around 20yrs. I keep reading about stages, the Dr at the hospital has told me not to worrie about stages. At present I've been spared the itching part of the decease but I am so tired. I just feel everything is an effort. I get muscle fatigue and just of late when I get up from sitting I move like I'm in my 80s more than my 50s. My memory is totally rubbish at the moment too. I just would like to sleep, I'm taking urso

they make me hot and sickly, I'm sorry if I am moaning but I'm quite confused by it all.

[Hidden]

Hello Leighton56.

I was diagnosed with PBC back in December 2010 but didn't have any other health issues (and don't today either).

I found I had initial side-effects from the urso but they vanished after I'd taken them for 3 months. I got heartburn that was not so good as I was never prone pre-urso. I persevered with the urso and seeing the blood results (the liver function test - the LFTs) start to decrease made me carry on taking. Never really had any further problems with the urso and been taking it over 5 years now.

My path to PBC diagnosis started early 2010 when I started itching. I had fatigue at the time but didn't think anything of it. Fatigue vanished some time during 2011 but the itching has persisted though not like it originally was.

I personally do not think about stages of PBC. I know in America for instance they tend to insist on a liver biopsy for staging but to me I can't see the point. I go how I feel and that's that. (I never had biopsy for diagnosis due to having symptons, abnormal bloods plus it was found I had the relevant antibodies (the AMAs).

I think it feels better in my opinion to just try to carry on with life and to resolve with yourself to deal with things as and when rather than worrying about them needlessly. With PBC seems that we are all different even if we can have the same symptons and some things might never happen so to me why worry about them now? I just want to get on with my life and live it the best way I can now. Can be difficult sometimes when it isn't such a good day but there's really nothing else I can do except take good care of myself.

[Leighton56 in reply to Hidden]

Thank you, for replying it helps to know that some of the similarities we have can possibly change. Like the tiredness which I find debilitating and the memory impairment can be embarrasing. I have just been getting along with it but just at the moment things are getting a little on top of me. Again thank you for taking time out to help me.

[LindyRich in reply to Hidden]

I wish I had read your post a few days ago before I started trawling the Internet looking up endless symptoms. I agree with what you said about tying to carry on with life and deal with things as they occur. It's too much too take in when you are newly diagnosed. Good attitude.

Thanks

[Hidden in reply to LindyRich]

You're welcome LindyRich.

Yes I think it can be much being diagnosed with something that we are never going to be rid of and probably die having PBC rather than it being the cause.

I know myself although I stumbled across PBC (library ref book then found PBC Foundation and Liver North online - by the way if you haven't, request the free DVD on PBC from Liver North (tap in 'liver north' in your search to find), it is informative (though I didn't watch it all, my husband did)), I didn't think I could possibly have it though my 2 symptons I knew I had plus blood results that weren't good did correlate with PBC, hoped I didn't have it and that it was a temporary health glitch.

For some time following diagnosis Dec 2010 I did think that if the symptons I knew about vanished I'd not have PBC. Of course that isn't right. I did have fatigue early days but that somehow vanished and I am fine there though I do get tired later afternoon sometimes due to broken sleep at night with the itch.

I think once you hit the annual mark being diagnosed and then another year and so on (I've been itching 6 years this month) you do start to relax a bit and don't think about it as much. I still have the view I'll deal with things as and when and go off how I feel rather than anything else.

[GrittyReads]

It's always best to avoid much of the stuff about PBC that is on the general website, as much of it is out-of-date and overly scary.

I would talk to the trained advisors at the 'PBC Foundation', they host this site on the 'Health Unlocked' website and a link to the 'PBC F site' is at the top of this page.

Once on their site you can find phone numbers and email links to talk to their advisors, and there are links to info about PBC on the site. If you join (it's free) you get more info and access, including their wonderful compendium on PBC.

As Peridot says, the BLT is also a mine of information.

There are loads of people on here who can help, but we are all very different (PBC is very variable in its effect, side-effect, symptoms etc - although fatigue and itching are the main early ones), so it is good to talk to someone in a similar situation to yourself. Blood tests for abnormal liver function tests, and for the presence of AMAs (antimitochondrial antibodies) are the 2 main diagnostic criteria of PBC, and both should be done [NB always get your own copies of blood results and letters from consultants etc, very useful when talking to advisors or new medics].

Liver, biopsies may be done if one of these 2 blood tests is normal: some people (about 5%) have PBC but don't have AMAs. Also, some people, (including myself) just test positive for AMAs but don't necessarily have PBC, especially if all liver tests and all other tests are okay, and no symptoms.

In both these potentially non-PBC cases, other tests and examinations should be done, as different sub-types of AMAs are typical of other autoimmune conditions, plus people with PBC often have other autoimmune issues.

If only AMAs are found, with no other evidence of PBC, or anything else, then annual checks of liver bloods should be done, as PBC can eventually develop.

Hope this helps. Eat a good diet, try to get regular exercise when you can do it, and avoid alcohol (more advice on the PBC F site), Above all, try not to worry, and do things to make yourself feel good, papmer and coddle yourself, and try to live life to the full, as autoimmune conditions thrive on stress.

Take care.