I know all the 'experts' say they don't known what causes PBC and that there is currently no known cure but when I was being tested I was only ever asked some pretty basic questions about my drinking habits. How do they ever hope to find a cure if they don't ask proper questions to find a definitive cause?
Has any extensive research been done, if so can anyone point me in the right direction?
Sorry, I'm probably just being a bloke and trying to fix the problem, just humour me....
Research, yes, extensive not that I could find. I was dx Jan. 2011 and have spent every day (at least 5-6 hours per day) on the internet looking for answers.
My conclusion...PBC is a rare disease therefore not much money to make for the drug companies therefore not much research. That's just life.
I have found out more information here from the people that live with PBC than from any of the doctors I've seen. Thank god for this site.
Thanks Kosy2 for your response, I looked on the internet the day I was diagnosed with PBC back in 2010 and didn't like what I read so haven't been able to bring myself to read anything else since. I'm sure I'll learn more from reading other members posts on this site. Cheers.
hi there the pbc foundation and british liver trust have and are currently researching causes and treatments. FRom what i've read it seems like there are only theories nothing concrete.
The foundation sent out some questionaires a few years ago and published their findings.The things i remember are hair dyes, tonsilillus or similar recurrent infectons, water supply...accounting for regional differences, if you google it your sure to find something more. One thing i do know from what i've read and attended conferences is that the autoimmune responsible for various diseases is an unusual response to infection, making the organs attack themselves
hopr this helps
Thats interesting. It was after being very ill all my auto immune stuff including the PBC started.
Hi Spoul, thanks for your message. I just wondered if every person who was diagnosed with PBC could fill out a standard form with various questions about diet, lifestyle, location, environment, medical history etc. etc.. it may allow specialists to see trends and be able to more accurately pinpoint a cause. I assume something like this has been done in the past but just thought if everyone did it as a matter of course it would give them more accurate results. I'm not usually one to take the time to sit and fill out forms but this is important and could benefit all of us......
I felt frustrated that the only thing my doctor and specialist asked me about was if I was a heavy drinker when I was younger.....and then proceeded to tell me the condition had nothing to do with drinking... go figure! Not very scientific I thought.. It seemed like I'd just been told, "you've got PBC, it's incurable, get on with it" and I want to be a bit more pro-active than that.
Surely knowing the cause is the first step to finding a cure?
I got a brilliant A5 Ring-binder full of information from the PBC Foundation. It's called, 'Living with PBC'. I've found it very useful. My Consultant told me PBC it was genetic but not hereditary. I was diagnosed about 2008 and my sister was diagnosed about 3 months later. She is an insulin-dependent Diabetic. From what I can gather Diabetes is also an auto-immune disorder. I have Scleroderma another auto-immune disorder so I'm assuming that is the connection. My brother has a different liver problem called HSP but so far hasn't been diagnosed with an auto-immune disorder. I also have Raynauds, Fibromyalgia, Arthritis, Asthma, Depression, Hiatus Hernia, Insomnia, Migraine, PBC, problems with my pancreas, sjogren's syndrome, sciatica, telangieciastis (think that's how its spelt). Think that's all. I have great Consultants though and attend four different hospitals. So some things overlap, eg: Rheumatology and Gastronmy in respect of Scleroderma, Raynauds and PBC. Not sure if any of this helps at all. Hope so. All the Best, M (
Wow Maggs, sounds like you have the full set there. Thanks for your reply. Keep well.
I don't smock and I've never been a big drinker. I've checked with my family and members of my extended family and none of us suffer from any auto immune problems - except me with PBC. By the time my mother got into her 70s she had some slight wear and tear arthritis in her hands, but the rest of us haven't suffered from anything greater than that. Some of us get high blood pressure, some of us don't, and most of us die of some sort of heart problem.
The one thing that's different about me is that I was put on the combination of the betablocker Atenolol and the diuretic Bendrofluamathiazide and left on that combination for over 12 years to keep my blood pressure down. During that time I swelled up with water retention and never went to the loo during the day but woke up several times each night to go to the loo. At the end of the 12 or so years I was told that I ought to come off this combination as it could lead to high blood sugars and diabetes. I was put on Ramipril and taken off the diuretic. I immediately felt like a new person with lots of energy and began going to the loo normally, during the day and slept all night long. I also stopped swelling up with water retention.
So I wonder if the effect that the combination of those two drugs was having on my body, particularly on my kidneys, my blood sugars and my liver, had anything to do with my PBC?
Is this a ridiculous idea - toxins from drugs causing the problem?
Pat_H
Hi Pat, there seems to be an endless list of possible causes...It may be that there is no one thing that causes it and that it's a combination of factors. Thanks for your reply.
hi, i think my pbc was bought on from a hepotoxic reaction to rifinah (an antibiotic) has i had a negative ama 2 months before i had a reaction to the antibiotic and about 1 1/2 months after the reaction i tested positive ama that was 10 years ago but i have only recently found out as the doctor never informed me.
There is the research programme which is going on in Cambridge at the moment. Are you all taking part? Updates are normally posted in The Bear Facts. The more people who take part the better chance they have of discovering more about the condition. x
Hi Jtxx, do you have any more details you can give us, can we take part?
As it is based in the UK I am not sure if anyone who lives outside the UK can take part. Don't see why not. All you have to do is send either a saliva or blood sample, as well as fill out several forms. Contact the PBC Foundation for more info on the rules. Good luck. X
I think in groups like this one where we talk and share with others we stand more chance of finding things out.
Ditto x
Double Ditt!! LOL
If it hadn't been for a forum like this one when I was first dx with AIH/PBC crossover 4 1/2yr ago, my husband would probably have left me - and we have too many years invested. My Dr. put me on 40mg of Prednisone and I had absolutely horrible mood swings. The "members" on the forum probably helped save my marriage with all their support and prayers and my being able to read to him their comments and let him know that "it's not just me - it's the meds and the disease." As we decreased the Pred. things got better and now we only fuss every couple of days.Hahaha.
Ya'll hang tough!! GA
Hi everyone...I am also in the mind set that toxins from all the different medications we are given may be a cause for PBC. The trouble with autoimmune diseases I think is that we all have so many symptoms that our gps diagnose as an illness in themselves and fail to look at the possibility they are all linked to one underlying cause.
I have hashimotos disease, AIH and PBC, I also have trouble with gluten and am being tested for celiac disease as well. All the symptoms that present with hashimotos can be mistaken for seperate illnesses, and in the same way so can symptoms of PBC etc. Our Gps treat these symptoms individually so we are subject to taking medication we don't actually need for conditions we don't actually have...and this misuse of medication can poison our systems. Theres no wonder our immune systems don't know what their job is anymore.
I threw all my medication back at my GP in November last year and told him straight I would only take what is necessary for my asthma. I was on 15 different medications for 15 seperate conditions. I just did my research and linked everything.
I feel the medication is responsible for my liver condition and one in particular which I was given for my asthma (Uniphyllin contus) contains theophyllin which affects the liver. The only remainig meds I took was my traditional inhalers.
Now This......
Thanks
xxconniefused.
I have a great specialist who is doing research on PBC and they seem closer to finding a cause. Here is a website that does a quick review of it aihealthsolutions.ca/resear.... There are plenty of sites about his research. I am next to go on the medicine that they are hoping (if not a cure) will be able to repair and control the progression of PBC.
Hi SLWB, thanks for the info, it was a very interesting article. It is nice to know that there are people out there doing quality research work. Good luck with the new medicine and keep well.
The link doesn't work.. Maybe because the post is 7 yrs old. What was the medicine you was referring to SLWB??
PBC
PBC 
