Question

[Bakerc]

I know they have change the name of PBC. My question is since I was just diagnosed 2 weeks ago cofirmed by liver biopsy that come back saying primary biliary cirrhosis. Does this mean im in the cirrosis stage? Just wondering if anybody knows. Thank you in advanced.

[EileenUSA]

Hi,

My doctors network coding system--databases still haven't caught up with the name change either, so the Dx on my records still calls it Cirrhosis instead of cholangitis. Name changes take a lot of time to get implemented across all the medical and insurance interfaces and coding database systems.

Eileen

[EileenUSA in reply to EileenUSA]

For example.. if you google the words "Primary Biliary Colangitis Mayo". The result it returns is

mayoclinic.org/diseases-con...

[Bakerc in reply to EileenUSA]

Thank you Eileen

[cazer]

no its just the name some are not used to using the new name... meincluded.

this was why it was changed... the old name implies every one has cirrhosis but they don't.... it just that some people do after time some never get to that stage. so please don't worry yourself about it. xcazer.

[Bakerc in reply to cazer]

Thank you. I am crazy with worry.

[Hidden]

Hello Bakerc.

Back in 2010 I was diagnosed with Primary Biliary Cirrhosis. A few years later it was decided to change the C part to Cholangitis. I disagreed with the name change due to the fact that to me Cholangitis doesn't sound somehow serious. PBC might never get to a serious stage but at the same time we can develop cirrhosis.

To me what's in a name, it is still the same regardless of what PBC is known as.

I was said to be in early stage PBC back in late 2010. I was diagnosed without the need for a biopsy. In the UK they tend not to he performed unless there is doubt as to what the problem is.

[Bakerc]

Thank you for your reply. Its just really hard of the not knowing. I feel awful most days..with no energy and pain. Hopefully i get some relief soon.

[Biddyb]

A few organisations have not updated from Cirrhosis to Colongitis, check with your consultant whether you have Cirrhosis or not, that is why the C was changed as we sufferers didn't like it, automatically people assumed that it was alcohol related which PBC is not

[Bakerc in reply to Biddyb]

Thank you. That is one question i have written down to ask. Hope your doing well.

[Biddyb in reply to Bakerc]

Yep have a few low times but I try where I can to force myself to be active if possible. I also try and eat a healthy diet and I have given up alcohol as it is very toxic and makes the livers job harder. Was diagnosed in 2004 my problem at the moment is finding if I have AIH overlap I changed my consultant last October at a different hospital but getting no answers, not happy to take anymore drugs so in a stalemate really. Lots of help on this site keep reading and keep posting. Good luck

[Bakerc in reply to Biddyb]

Thank you. Hope you get some answers. Best wishes.