"They" keep saying they don't know what causes PBC, but no one has ever interviewed ME about my health history - have any of you filled out a detailed questionnaire about your health history? If people with PBC aren't being asked about their histories, then the cause will never be discovered. For instance, it's possible that my PBC was triggered or exacerbated by my having Lyme disease, or taking inhaled steroids for two years for asthma, or living in a construction site with black dust everywhere for three years, or related to my O- blood type, or the Molluscum Contagiosum rash that I had ten years ago for 6 months … Anyway, if someone were bothering to ask all of we middle aged women with PBC about these things, maybe we would find that we all do have something in common in our histories and that could be pointed to as the cause.
Cause of PBC: "They" keep saying they don't... - PBC Foundation
Cause of PBC
Hi , I have never been a builder, had asthma, I do not have O-blood or any other ailments but I have had PBC. The consultants at the Queen Elizabeth hospital in Birmingham told me they still do not know what causes it. Stranger still I am a male, I consider the fact that we are really pioneers of this disease. When I was transplanted I gave my permission for my liver to be used for research. I hope it all goes well for you. Take Care
Hi, I have been told that lifestyle is nothing to do with PBC. They can't ask the questions because there aren't any to ask unfortunately. Nothing kicks it off apparently? Mines hereditary from my mum. Let's face it, they know nothing about the disease and that's the worrying part. Years of scientific study and still nothing sadly. When I've mentioned PBC at a new doctors they say 'what's PBC'?
Hi there
I have filled in a questionnaire and given a sample of spit if I remember rightly. It was a couple of years ago and I get brain fog but it was conducted throught the PBC foundation. I have also done online surveys again conducted through the PBC foundation. It is being researched. It has been suggested in the past but not conclusive that henna tattoos and hair dye could have a connection. But, for someone to suggest this must mean some research has been done on this in the past. I have never had a henna tattoo but do recall having henna dye on my hair several years ago. I dye my hair now as going a bit grey but didn't dye my hair when I was diagnosed in 2009. I have a spider neavi rash on my chest that appeared during my second pregnancy and has never gone away. 6 months after having my second son, we all got chicken Pox. I thought I was going to die. I was very ill for 2 weeks and then the rest of that year and for a full 12 months caught everything going. I often wonder if the chicken pox virus had anything to do with it or one of my pregnancies. Something switched inside of me and something must have set it off. Think hormones have been suggested as mostly females get PBC but how does that explain the few men that get it? I have two autoimmune diseases my other being autoimmune hepatitis, another one that causes inflammation of the liver. Many people with PBC have more than one autoimmune disease. There must be a connection somewhere and it would be interesting to know what it is. Hopefully further research will be conducted. Have you contacted the foundation and asked them if there is currently any research going on. They may know if you can still submit your DNA to the other study. I know they wanted 20000 subjects and feel sure they reached their target but there may be a facility to add more. Speak to Collette.
The Pbc foundation did send out some questionnaires a few years ago but I'm not sure if they published the findings. They asked about childhood illnesses and antibiotic use. I also remember they asked about use of hair dye and the like.
If you contact them they may be able to help you further, but research is ongoing
From what I understand they dont know. University of cambridge are doing a study which my hospital asked (kettering) asked if I would participate. Saliva sample and questionnaire. Never adked about blood type (o-) but cant see how that would be relevant.
My consultant mentioned clusters of PBCers and I think their looking at bacteria.
I have this totally irrational feeling that my health problems date back to being very mosquito-bitten some 25 years ago! There is absolutely no proof of this, but I suspect we are all searching for a 'cause' to hang our anxieties on. The only thing we can do is to help with all and any research that we come across. And to spread the word far and near that there is such a condition as PBC. One day there will be an answer - suspect I won't be around when it happens! Good luck to all ...........
Despite all the research that has taken place, I think that the questions asked are probably still quite narrow. I do think that 'drug cure' related research does dictate the path that research takes, overmuch, and that there is a danger of researchers fixing on a track and not stepping back and looking at the wider picture.
I say this, but I'm not madly into alternative therapies, plus I'm grateful for the research that has taken place up until now to give us Urso, etc. as I may need to use it soon. But, I still think that the search is too narrow and probably dictated by pre-conceived pathways ... but that's how science tends to work.
I did ask my consultant about the 'hormones and menopausal women' issue, but he just shrugged and told me to go and research some Endocrinology Journals.
NB all women have male hormones, & all men have female hormones, so there could still be an issue there.
But yes, spit and blood only tell a small part of the story. I am already relating to mosquito bites and henna from reading the comments above. So, much wider, deeper, and all-encompassing research is definitely needed, but there isn't the money - maybe we should do it ourselves???
I had Mono when I was In college and i was never the same after. If there was a trigger in my life I would bet money it was that. Problem is that is a failure if the immune system so did it go into overdrive after? I think I got from my mom too but Ive always wondered about this too
It would seem pbc is an autoimmune problem and that is often hereditary. Something could trigger the immune system to overreact (like virus or other illness or even exposure to chemicals) in those of us who are predisposed and attack the body in some ways. I also have under active thyroid, my mother had rheumatoid arthritis, as did an aunt and uncle and my cousin died of multiple sclerosis - all autoimmunes. I read this week new research on cancer treatment involves stimulating the immune system to kill off the cancer cells so there is work being done on the autoimmune system so perhaps they will discover something that might help all those who suffer autoimmune problems like us. Keep hoping and praying folks, the answer may be closer than we think xx
There is a Genetics Study going on at the University of Cambridge and a lot of PBC sufferers have sent in blood or spit samples as well as answering numerous medical questionnaires to help to find out what causes PBC. Either google it or contact the PBC Foundation in Edinburgh for more info. Hope this helps. X
Good point well madejuiannath..its my argument with medics too.for generations my family tree on both sides live VERY long and active lives many into 3figures.me whose always lived a very healthy lifestyle ends up with this.i believe it's something that I've been in contact with for a long period-maybe out walking my dogs on regenerated pit site(Hickleton Main) or as an art teacher some of the chemicals in pottery??maybe I just drew the short straw but I strongly believe in genetics so I have my doubts it's inherited.i think we should all shout a little louder to be heard.i did a study for Pbc for Cambridge a while back and although they didn't require anything like that in depth I sent one anyway.maybe someone will look.never dyed my hair never been much for make up either also never ever had health probs.jury is out
My problems all began after menopause, that leads me to believe it is hormone related.
I have had none of these things, but agree how can they study if they don't know who we are. I have had severe osteo arthritis in hips and now knees and taken mountains of tylenol, and other pain meds for 20 years. How about that?
Reading everyone's story here, there are no real links.... I have not had my menopause yet, I have one child who I had late in life, I have never worked with chemicals or taken many medicines. I am allergic to antibiotics and many types of make up/skin creams etc...
I think stress may play a part, but the thing is my brother has had PSC for over 25 years, another liver related auto immune condition, my other brother has neither..... A close colleague has very recently been diagnosed with giant cell arteritis, another auto immune condition, many of her symptoms are similar to those of PBC, but her liver is fine....
I think the studies should be on the immune system rather than on PBC per se, because the cause is there to start with, then why is our condition related to our livers and not something else in our bodies.
Enjoy the sunshine
L
I have to my knowledge until I started to itch early in 2010 never had asthma or any other health problems prior to that. I did have my appendix out the day before my 13th birthday back in 1977.
I don't know what kicks off PBC to start. Someone on here suggested because of pregnancy but I don't think so or men wouldn't surely develop PBC. I am a mother of 2 children, normal pregnancies and deliveries with no problems.
I suspect though I don't know if I am right that my uptake of hepatitis vaccinations several years prior to finding myself with the itch might be responsible but I can only wonder.
I broke my ankle when I was aged 10, could that perhaps have something to do with it?
All these questions but I don't think about it anymore. I would prefer to just get on with living rather than ponder how come it was me and you never know one day it might be known how it all starts up.
Mine is by heritage my wonder is if they did a linage by DNA if we would have one in common?
I'm a newby on this site, I was diagnosed just over a year ago now first by blood test that the doc could not really understand and then I saw a gastro specialist and had a fibro scan rather that biopsy. I remember having Ranauds symdrome in my late 20's early 30's,and I used to bruise easily, the palms of my hands get mottled (and still do) then having acute anaemia accompanied with hair loss. I witnessed my late husband commit suicide and they thought the tiredness was ME or stress but I think I've had the PBC for a long time it's just that no one did the right tests. Everyone I talk to knows nothing about it apart from a personal friend who has it. I'm not on medication at the moment, just trying to follow a healthy lifestyle. 
Hi all I think the initial results of the big DNA research study into PBC has shown there is a common gene that all people with PBC have as far as memory serves me but at mo I can be forgetful si wouldnt say am 100% on that but you can check with the PBC Foundation they published the results in the 'Bear Facts' magazine. I myself have a few theories, I definately feel there is a genetic component as I have three sisters 2 of which like me have an Underactive Thyroid and one, the eldest, has Polycystic Ovary Disease and these are all Autoimmune Diseases like PBC. At the time I took the very first symptoms of PBC, namely horrendous itch 24/7, joint pains and fatigue I was going through a very stressful time in my life and as a result was, I feel ,a bit ' run down' and took 2 really bad bouts of tonsilitis. However at the time I was working in a care of the elderly ward in my local hospital doin 12hr shifts, One morning through another nurses' sloppy work, I sustained a needle stick injury from a male patient who had some sort of un-diagnosed virus/infection. (The Nurse working with me had left a needle( that had been in the patient under his skin to administer fluids subcutaneously to him) on the bedside table instead of placing it in a sharps box and whilst I was tidying up the table after bed-bathing the patient, accidentally stuck myself with the needle! It was not long after this that I started to suffer really bad itch and then the joint pains and fatigue followed. However I would have just put the fatigue down to lack of sleep due to the itch at night and the joint pains to the nature of the heavy work I had to do on this ward. So had it not been for the relentless itch I woulld not have attended a dr and thus never have been diagnose with PBC. I agree with someone else though who states that there needs to be more research done into what causes Autoimmune Diseases in general as well as some more research into, I feel ,an alternative to liver transplant to treating the end stage of this liver disease as even liver transplant does not cure the PBC.
Hi Julianna, I also had the same idea about a detailed questionnaire, I would happily spend the time to fill out a form with questions regarding health and lifestyle if it helped them to pinpoint a probable cause. Personally, I am convinced my PBC was triggered by work stress. The other thing that puzzled me was being asked loads of questions initially about my drinking habits only to be told afterwards by the same specialist that PBC is not caused by drinking alcohol??... One final thing, men get PBC too.
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