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[Spanishnan]

Hi, it has been six years ago since my GP referred me to the hospital as I had raised ALP. I have since had 2 scans, 2 MRI, s, dozens of blood tests and a biopsy. I was told that I was a bit of a mystery as apart from a little background inflammation, they couldn't find out what was wrong with me but my blood enzymes were getting higher. I am now seeing my third consultant who has taken ELF blood test to ckeck for PBC. For the past six months I have been itching especially at night and have little spots like insect bites on my arms and back. I also have pain in my knees. I am feeling very confused but just hoping I haven't got PBC.

[butterflyEi]

Hi and welcome. I also hope you don't have PBC. It took 10 years for me to get a diagnosis. If you are diagnosed with PBC then ursodeoxycholic acid is the first line of defence. The guidelines published on the PBC Foundation web site (free to join) is a helpful read. Come back and let us know how you get on.

[GrittyReads]

The diagnostic procedure for PBC is very precise, and usually accurate, but a lot of general gastroenterologists, and even some liver specialists still don't know it, or follow it.

I would ask to see a top PBC specialist. I did this when I was wrongly diagnosed as having PBC, when actually I just have AMAs -M2 (anti-mitochodrial antibodies): I have no other signs or symptoms of PBC, and it has been known that I 'just have' AMAs since 1992.

I would first talk to the expert advisors at the UK's 'PBC Foundation' - either Google this, or just look at 'PBC Robert's' 3 'Pinned Posts' … to the right of this screen (I would ignore all other PBC posts online, as many are very old and out-of-date) . The 'PBC F' are wonderful, and their website has all the latest official research, findings etc from the best PBC Specialists, as well as all the details of how PBC should be diagnosed. They 'host' this site on 'Health Unlocked'

You need to have 2 out of 3 diagnostic features for it to be certain you have PBC.

1) High AMAs-M2, and/or: 2) abnormal liver function tests (lfts) that are typical of PBC (eg high ALP, but there are ususally other raised levels, eg: AST, GGT, and/or: 3) evidence of PBC activity at a micro level via a biopsy of the liver.

If your ALP is high and you have AMAs, then you may have PBC; but if they suspect PBC with no AMAs (it can happen) then you should have had a biopsy by now.

Please do talk to the 'PBC F' and check out their site: they are lovely.

Take care, Gritty

[EileenUSA]

pbcfoundation.org.uk/upload...

Hi,

Here is a link to a great document that outlines best practices for diagnosis and management of PBC. Also great lay out for us patients - questions to ask doctors etc. Check it out. And as Gritty mentioned, join the PBC Foundation U.K. It's free and has wonderful resources and quality info on PBC.