Newbie to this community - possible PBC

[nanashon]

Evening, new to this page....I am 56 and have had nafld for as long as I can remember, was monitored yearly...earlier this year I was prescribed statins and took really unwell..bad liver reaction and enzymes got worse, stopped medication and symptoms stopped..enzymes dropped but didnt stabilise....had phone appt with gastroentologist..their thoughts are now possible PBC...due to get more bloods done then probably a biopsy.....I got my letter re the call and there was some points noted, just wondered if anyone had any thoughts on these - chronically deranged liver function tests with predominately cholestatic pattern, fatty liver, no gallstones, adverse reaction to statins, antimitochondrial antibody negative, anti GP210 positive, last fibrosis score negative......i do feel a little overwhelmed reading this. Started googling then stopped 😱

[butterflyEi]

I see you are in the UK so I have copied the following from the NHS website:

"Many people are only diagnosed with PBC after having a routine blood test for another reason. PBC can usually be diagnosed just using blood tests. Once PBC is diagnosed, you'll also need an ultrasound scan to help rule out other problems with your bile ducts and assess your liver. A liver biopsy is occasionally recommended to assess your liver and help doctors decide on the best treatment. This involves safely removing a small sample of liver tissue so it can be studied under a microscope. "

Biopsy of the liver is not standard practice in the UK now for diagnosis of PBC so your gastroenterologist may wonder if you have an overlap condition.

If you join the PBC Foundation (free to subscribe but donations welcome) there are up to date resources. There are guidelines written in lay terms taken from the EASL guidelines.

The EASL Guidelines are standard practice guidelines for the medical profession this is easily accessed by people such as ourselves with a quick internet search. The PBC Foundation also have volunteers who run local groups, they hold regular Q&A sessions with specialists broadcast via Facebook Live or through a link for privacy. Yesterday, Professor Jones answered a question about statins during the chat, if you can access Facebook then you would be able to listen to the Q&A on catch up from the PBC Foundation's facebook page.

There is a book written by Professor David Jones OBE, PBC The Definitive Guide for Patients with Primary Biliary Cholangitis which can be found on Amazon and for me it is one of the best sources of information.

Please do not feel overwhelmed, it is a black hole just now but once you have your diagnosis and start medication you will be able to settle into a good routine. I was diagnosed in 2006 probably had it for at least 10 years prior, PBC is for most people a slow progressive auto immune disease and most will never progress to cirrhosis hence the change of name to cholangitis.

To help with your fatty liver and also PBC if diagnosed, eat a plant based diet, little red meat, avoid ready prepared foods which are full of preservatives and usually high in salt. Drink plenty of water, avoid all sugary carbonated drinks and sugar produce in general.

It is not so easy when busy working but batch cooking for you and for the freezer can work quite well. I make a variety of vegetable soups which will last in the fridge and eat plenty of salads with proteins such as eggs, fish and homemade burgers from pulses etc. I am not a vegetarian so I also eat chicken, turkey etc. I also occasionally make biscuits which are my little treat

best wishes

[nanashon in reply to butterflyEi]

Thank you Butterfly for that reply…I will definitly have a look at the foundation facebook page and that book…and thats good to know about what to eat and drink. You mention sugary carbonated drinks, whats your thoughts on diet coke?

I think your right , once I have the info I will

settle down into a routine…I do worry if it

is and I need meds will I tolerate them as I seem to be super sensitive to alot of things. I

also felt concern reading on here that if its

this GP antibody thats positive it means the PBC progresses alot quicker. Have you heard of this?

Thank you again!!

[butterflyEi in reply to nanashon]

I personally do not like the flavour of diet coke and I do not think that artificial sweeteners are good for the body, they certainly do not have good press.

Apologies but I am unable to give any comment on the antibody, doctors look at the whole of your results to draw their conclusions and will have asked questions to guide their decisions which may and I say again may be why there is the suggestion of the need for a biopsy but until you have had the further blood tests ordered your gastro will not be able to make a definitive determination.

I know you will be worried but please do take heart, the world of PBC has moved forward in great leaps in just the last 2-5 years with new treatments under study. Having said that the first line therapy URSOdeoxycholic Acid has been around a long time and is a very well tolerated medication.

I hope you will not have long to wait so that you will know which direction to take.

best wishes

[Liz_K]

Hi Nanashon, I m fairly new to this site too and was so pleased to know that I'm not alone with this wretched condition and that its comforting to find that we are able to share experiences with other fellow sufferers. I was diagnosed with PBC just over two years ago and like many of us, just by having a routine blood test. Because I am assymptomatic - ( at the moment ) I have probably had it for years without knowing! Like you, I am also AMA negative but ANA gp210 positive and have also worried myself into sleepless nights after googling 😱. I have been through all the necessary tests required for diagnosis eg. ultrasound, MRI, fibroscan and lastly biopsy (which I balked at, but specialist insisted that it was necessary for stageing )- I feel that because I am AMA neg but gp210 positive it would confirm PBC. I have been on Urso since diagnosis, but because my enzymes didnt stabilise and started to climb I have in the past few months been prescribed Ocaliva as second line therapy. Had an appmnt with my gastro/hep doc 2 weeks ago he was pleased that my LFT's have now come down (ALP 192 and GGT 35) So Ocaliva 5mg and 1000,g daily seems to be working 🤗. I hope this info puts you at ease as there arent many of us with gp210. and its reassuring to know with all the new treatments and research being done we can continue to enjoy our lives and stop worrying 😊. take care 💐

[nanashon in reply to Liz_K]

Hi Liz, thank you so much for your reply…it actually made me feel some relief just reading it!! Googling for me was just the wrong way to go 🙈🙈 it totally stressed me out!!

So you also have the same positive antibody as I do….Im guessing your biopsy was clear in diagnosing PBC? I feel I will be waiting a while for my biopsy..I think it will be a long waiting list…tbh when I had my telephone appt with the Consultant I was expecting it to be about fatty liver so was taken by surprise when it was about PBC so didnt ask many questions.

I dont know what scores I have but when I took ill with the statins it was 700 plus came down to around late 200s but I was referred as was increasing again.

Its good to hear your on these meds and things are improving!!