If you get very groggy and fall asleep during the day, regardless of where you need to be....and drop things for no apparent reason....this article is extremely useful to read, and a big relief for me after years of being bullied by GPs and some consultants. Just a few months ago I was told by an endocrinology consultant "PBC doesn't have any effects really, does it?". Please share this article, it will be very useful for anyone who is having problems with medics who refuse to help and e.g. tell them that unless they have developed cirrhosis PBC is completely harmless. It isn't and here is the proof. At last someone has actually bothered to do some research. Many thanks to the researchers and docs who have published this - long, long overdue.
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Very interesting article! I should send it to my Gastroenterologist who yesterday told me that because I did not have cirrhosis as yet, my fatigue, brain fog and poor concentration was not related to PBC!
That's the exact explanation I had from my consultant, she even sent me to rheumatology for further autoimmune testing thinking I had something else as well. Rhumatology explanation was I had a functional disorder i.e. Nueological ( brain gone haywire ) are we back around to the neurological affects of pbc... iam going to take this reasearch next time I go..
My specialist has not mentioned these things . I could not read the whole article I'm afraid I just could not understand it all and the medical terms . I believe someone yesterday said this was an old article .
I think you will find Mirimaur, that the article is a fairly recent one (states it was published July 8, 2017) - if you look down to the "References" there are quite a few dated later than 2010. Of course there is always the possibility that the article may have been an old one that has been updated to include more recent studies that confirmed the original findings.
Thank you Diane . I did try to read it again but o found some of it too over and above and beyond me , if that makes any sense. Some of the findings at the the end of the article were inconclusive and some of the findings seemed to depend on how chronic The fatigue is .I did not quite understand about the grey matter in the brain . When I next see my professor who treats me I will show him this article .
I guess it disturbed me a little as I dread the thought of depression and behaviour problems. It's hard enough to deal with as it is. I am trying too be as positivite as I can.
I did Also read in the article you sent that excersise can help .
Ha....you're not alone in not understanding parts of the article ('grey matter'), I'm kind of struggling with understanding it myself.
One thing though, NOT everyone with PBC will experience depression or behavioural problems - I've been diagnosed for over 28 years and really have not experienced depression. Behavioural issues, in the form of Hepatic Encephalopathy (see link below) have begun to be a bit of a problem for me, but then again, I'm Stage 4 with extreme fatigue, so these symptoms come as no surprise.
I guess my point here is don't worry about something that might not happen
Dear Diane , Bless you , you have made me feel better . I must admit that article frightened me somewhat .
I have just been diagnosed , very early stage , mild fibrosis .I am now on Urso . I am so pleased that you have not suffered with depression . I pray neither will I .
Did you take Urso when you were diagnosed twenty eight years ago . I pray you will be ok . You look so young and well in your photo . Thank you for helping me
Thank you for your kind comment, Miriam - that photo was taken about 5 years ago and sad to say I'm now looking about right for a 71 year old
I didn't start taking Urso until I had been diagnosed about 7 years - I don't think it had been approved here in Australia when I was first diagnosed.
Glad I could help - a couple of things to remember always get copies of all tests etc. and only ever look at medical sites, or this site, for information concerning PBC.
Reading that article made me think - I feel depressed, not throw myself under a bus depressed, but as if something is holding me back, I don't want to get up in the morning, or go out - I'm thinking of all the things I have to do days ahead and how I can get out of them. Even visits from friends I dread. Ive been like this for sometime, I don't have any demands on me like many of you do - just me and my husband - I'm so boring I don't know why he stays with me. Could this be the grey matter that this article is talking about? Kandiepat
Not sure about that Kandiepat, but extreme fatigue appears to influence my thinking patterns to such extent that I don't want to have to deal with people, mainly because I don't seem to be able to follow conversations etc.
Maybe having a chat with your doctor would answer your questions.
Thanks DianneS, I expect your right, I need to count my blessings of which I have many. That's better than pills I think 😀Big hug from Ireland kandypat
As for tips on a diet - I've never followed one. I have pretty much eaten whatever i wanted over the years. You will find as time goes by that you will eliminate certain foods because they no longer agree with you - well, that's what I have done over the years.
Dear Diane , I'm sure you still look beautIful. my professor at the hospital always sends me my results and test details of my blood tests and scans and biopsy details.
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