I wish we could put our heads together and find a reason why we otherwise healthy women all got PBC. Was it the Shen Min hair thickener vitamins I took for several years, or from donating blood 4 times a year for decades, eating raw oysters, having lyme disease 8 years ago, being on steroids for asthma for two years ... ?
Add on: O negative blood type, competitive running, electrolysis hair removal, staying up late ... ?
I don't think so. I didn't have or do anything like that but I have had PBC knowingly since 2013
the only one of those that are the same for me are donating blood, and I am pretty sure that is not it.
Have never taken vitamins, and do not have any other chronic illnesses that required drugs of any type.
Are you having a bad time with PBC right now? I'm only certain that it was nothing that you did that caused it, and nothing that you could have done to have avoided it. That may be no comfort, but my wish is that it could be and that if you are feeling low you will tell us, or do something you love doing, or would love to do, or all of these.
Best wishes
Thank you 2206! No, I’m fine and hopefully will remain so!
My liver enzymes starting going wacky after the birth of my third son. I look back on the pregnancy now and realize I was scratching my legs severely at night while pregnant. I think that pregnancy triggered my immune system on and to attack myself.
I also developed a red blood cell antibody called Anti Big E. It’s a rare Rh condition. My baby was born a “Blue Baby” and had hemolytic disease of the newborn, bilirubin through the roof, under quad bili-lights and had to have two blood transfusions, due to destruction of his red bloods cells due to me attacking him in utero.
Fetuses are essentially parasitic and therefore our bodies see them as invaders and we make antibodies. Well, that’s what happened to me anyway.
The only thing I have in common with your suggestions is giving blood and personally I do not believe that is likely to have caused this condition. Liver North a little while ago asked contributors to send in pictures of the ingredients on bottles etc commonly used by those with PBC. Once all the information has been collated research into a possible common factor is taking place. I believe that they are still looking for more input so if you wanted to get in touch with them their web site can be found at livernorth.org.uk/
I havent donated blood but have pbc
My cousin has pbc
My hep says its genetic
Thank you! I’ll do it!👍🏻
Hi,
Think its more genetics.
I am one of 5 female cousins and all but one have at least one autoimmnue disease. I was the most fortunate as i didnt become unwell till my late 30's,45 now and have 5 autoimmune now. We have concluded it came from my nana's side.
Ang
I know I’ve tried to think what caused my PBC. Is it because I started vaping? However, my vaping hasn’t altered my liver results...so not sure.
What is common is that PBC affects women more than men and is more common in women approaching menopause...there could be a hormonal link in addition to natural genetics.
Our lifestyles now mean we unwittingly consume lots of toxins through food and the environment, so these ‘invisible’ toxins could trigger our autoimmune system. But, there are so many variables there’s unlikely to be ‘one’ cause.
I’ve come to terms with not being able to explain where my PBC came from and now am concentrating on trying to keep myself healthy.
Try not to analyse your actions too much, and focus on trying to stay healthy.🙏
Best wishes xx
Right!!!
All I know is that I don’t have genetic autoimmune diseases in my family history, but my mum did have diabetes and breast cancer. I also went through quite a stressful period a couple of years before being diagnosed. Living with a controlling partner for years, work stresses and mum passing away...so I think Cazer is probably right in that it’s in our system and various things trigger it. Like a lot of things really. Our bodies work so fantastically, then sometimes they just get it wrong!!
I did see a video for medical students somewhere which explained how the antibody markers go haywire...I’ll see if I can find it!
Xx
my own personal theory is that we have it in our systems and then depending on the illnesses we have and stresses and strains on our bodies the bad antibodies kick in and start the damage off... then each time we have a difficult period in our lives they flare up and down... causing more damage.
i can pin point the time when i think my pbc first properly reared its head... we had been on holiday to a majorca snd and i got a typical holiday tummy... it passed... but when I got back to England we went to the pub for the evening... to catch up with friends and i had a couple of glasses of wine... only small ones... i was violently sick... a severe reaction to the wine.
around the same time i developed what i was told was irritable bowel... i couldn't tolerate coffee, fatty foods or any alcohol without feeling really bad for hours/days... i firmly believe this was the time at which the dodgy antibodies started in a strong enough way to begin damaging my liver.
this was 30+ years ago... after that first episode I had odd symptoms... like dry skin, frequent sore throats, tiredness which seemed over the top.... although I appeared pretty healthy it was minor signs and symptoms that it was not picked up on...
each time I had a virus or bug I seemed to struggle get over them... then after 3 children quite okay i had our fourth child and was really poorly whilst pregnant... with glandular fever... i developed the full blown itch, nausea, etc etc and was induced at 36 weeks... as both he and I were both not doing very well... hes now 19 and at uni.. I finally had a transplant in 2017...
so believe it took years to get from the initial tummy bug to txp...
can anyone else pinpoint the beginning for them.
of course it could have been even earlier but I feel 100% sure its viruses and bugs that do the damage.
p. s. i also had toxoplasmosis in my twentys... anyone else???
sorry for the rant... just struck a note, very best wishes cazer xx
Many things from your story kind of sound partially similar to mine.
My Mom was diagnosed with toxoplasmosis while was pregnant with me.
I had a chronic tonsillitis while was a child.
Then i developed very itchy rash in a last month of my pregnancy-almost 32 years ago, it all went away as soon as i gave birth.
Was pretty healthy otherwise with occasional digestion problems, but thought it was genetic, coming from my paternal Grandmother-she always had it, her gallbladder was removed.
Then, in a late 30th i started to develop terrible muscle pain, the first attack came after eating the large amount of cheese.
To make long story short-went through various tests,,,ALT and AST were elevated.
Doctor ignored it, and i ignored it too.
Was eating selectively, healthy and took muscle pains under control...
Then, at 50, after beginning of menopause, death of my Dad, lots of stress went to Cuba, got 1 day stomach flu -pretty bad one.
Came back home, and all the digestion problems and right side discomfort started, Went to doctor and asked for complete liver panel test etc....thats how it started.
Diagnosed with PBC...
Just forgot to mention. I am 52 now)
Not a rant at all! Our instincts when it comes to our own bodies are really strong! That’s really interesting; thank you very much for sharing! I wish you continued success!
I've never done any of the things on your list, and I was diagnosed in 2003.
PBC, has been around for so long, it’s surprising there is still so much uncertainty, over and above genetics and an environmental trigger. I always have to ask questions of reasearch because for every study proposing one theroy there will be opposing therories.
I don’t go with the chemical theroy on its own, chemicals are everywhere , we breathe, eat, touch and use them daily. Being female and hormones was up there to for a while, but men get it too so that therory seemed to get lost. But did you know that vitaminD is a hormone and more women than men are deficient... (or so I read recently)
I think bacteria after abdominal surgery was what started in me, I’ve not been the same since.
But whatever the trigger.... I beleive genetics has the answer. It would be wonderful if everyone worldwide with PBC, had genetic screening the more patients they have for reasearch the quicker they will find all the answers.
I joined a study in the UK, but my doctor hadn’t read or heard about it. I read about it in the PBC Foundation magazine, it was a simple signature from my doctor for the blood test, and acouple of forms to fill in and then sent it away.
Nope. I didn’t have any of those in my life. It’s something we had or did. Something that triggered our bodies to react. The only thing I’ve heard some substantial correlation with is Epstein Barr Virus or “Mono”.... which I have had. They think it may lie dormant and then something triggers it and it’s active again- PBC form. Like chicken pox and shingles. No direct proof- but lots of speculation.
I haven’t done or got any of them but I had take pregnancy pills for five years and got tatoo done and got some dental treatments done. Delivered two babies. With the second delivery I had taken strong antibiotics as I had thrush problem in ninth month.
It’s brutal not knowing why you are sick .Its natural to seek answers .Seems little is known about auto immune ,however current research on immunology as a cure for cancer might provide some answers .Its not anything we did The reality is something is going to get you as no one lives forever.Its so important to make the best of it all xxxx
It is frustrating...I think also “what was I exposed to?” My grandmother had it and she died in 1987, I was 21 years old and close to her...I often think what we’re we both exposed to? I too believe it’s genetic with an environmental trigger...check out this video
tonia17...my new hepatologist said he firmly believes my thyroid triggered my PBC. I had partial thyroidectomy at age 14 & radioactive iodine at 23. He said somewhere, somehow through all these years it got me. I am 64 , so 50 years of thyroid.
My grandmother (had PBC) and mother (who knows cause she refuses to be tested 🙄) both have thyroid issues...so does my mothers sister...2 sisters and none of us have thyroid and I’m the only grandchild with PBC...I am the oldest with an 8 year gap between me and oldest sister...but their heads are stuck in the sand as well...
tonia17...I have one aunt who also had thyroidectomy & no other issues. One cousin with thyroid issues, RA & sjogrens. It’s strange how it jumps around. I’m off to work. I’ll be here later this evening. Have a nice day!
i was told that i don't make enough iga s... hence the inability to get over illnesses...
i agree its bound to be genetic... misfiring antibodies but we would be very interested to know the trigger.
as an of shoot... how many are cat lovers...??
Me! I have 2. Sunny & Bella🐱
I’ve always had cats.
scthompson...love my fur babies. Sunny is very independent. Bella is my shadow, lol!
Seems like none of the things I listed are a common experience for us. What about what someone mentioned about the difficulties of having babies when the mother has RH negative blood? That would explain why more women have pbc than men. Or having cats? I’ve always had cats, and have O negative blood. That said, I understand that it’s unlikely that there’s one trigger that we all had. By the age of 50 most people have an affliction of some sort, such as joint problems, digestive issues, heart disease and high cholesterol/blood pressure, breathing problems such as asthma/copd, etc., and our affliction just happens to be pbc.
Im seriously looking at the Epstein Barr Virus, or infectious mononucleosis. I know that I had a lymphadenopathy after which I became sick and so did my husband who went on to develop Rheumatoid arthritis whilst I developed PBC. Just google any disease association with EB virus. It will be there. The virus changes cellular DNA and triggers all kinds of diseases. My gut tells me this as my husband developed symptoms of rheumatoid
arthritis three weeks after the swollen lymph nodes. There is much that the medics don't know about this virus. Its not simply dormant in our bodies.
ht
I've been reading Liver Rescue and all of Anthony Williams books. What Anthony Williams write about EBV and autoimmune conditions really resonnates with me. I'm going whole hog with what he suggests. Found a grwat practitioner to help me figure out what's best for me. My mother developed RA while I was invitro, her mother had an unknown auto immune condition, her sister has Sacradosis, brother MS. I think all of them had thyroid issues and diabetes.
My wife has Diabetes and thyroid conditions along with the PBC. Ill get books by A. Williams but I haven't been able to find a publish paper that aims to cure EBV. Any direction from you will help. I have found this virus to be associated with every condition I read on including gum disease that doesn't resolve. The thing is that by treating for symptoms of any autoimmune d. we are shutting down any defence against the virus. I also can't find an MD interested in my point of view. Phew!!
Hi shared,
Check out the books and check back with me. I'm still in the early stages of action per A. William. I did do a course of homeopathic treatment plus monolauren and l-lyseine about a year ago that helped somewhat. What I love about A. Wlliams is that he's all about nourishing your liver and supplementing to help it to do the work. I Love my Liver. That's my mantra. :). Good luck to you and your wife!
Shared - This is just a shared casual thought, not advice based on any published paper that I can name, but something in your words above prompts me to share what I recently discovered.
Horseraddish contains a substance that all people with autoimmune conditions appear to be deficient or insufficient in. It is a plant (brassica) that is very resilient, isn't overcome by insects, grazing animals, bacteria and other hazards. It has antibacterial properties that can benefit people. I buy the root fresh and keep a jar from supermarket for if I dont have fresh. It clears my sinuses. These can get so badly infected that I had antibiotics a couple of times (they worked for a week, then re-infection). I add grated HR to a few things in the day, and a couple times a day, eat a pinch of it on its own. If it did nothing else but clear my sinuses, it's worth it for me, and very effective. You may also be interested to see joyfulbelly.com for some interesting reads about food as medicine.
youtu.be/CQtHOMzLzwU here it is!!
Pleased to hear that! Thank you for all the interesting responses you have raised. I suppose we have all had times of trying to trace this back, I have certainly, and it just seems it was always there waiting to act (up!). These days it takes all my time to organise a way to live that is in some harmony with PBC to try to avoid making it worse. (Food, exercise, relaxation, care to avoid as far as poss. infection, and most difficult for me, removing house dust!)
Very best wishes
Dear 22, does house dust have something to do with pbc? And may I ask what you’re doing food wise, and to avoid infectikn???
DUST an excess of house dust was damaging to my health, caused rhinitis which is constant dripping nose. This can be a source of low level infection ongoing as long as the dust situation exists and beyond. (Excess, not just the "haven't dusted for a week)
FOOD I eat extremely little animal or animal products, only very occasional (once or twice a month) 1) organic, single source honey, 2) oily fish, very small amount, e.g. one sardine, or one ounce albacore tuna. I don't reccomend this to anyone else, it's just what works for me. What I do reccomend to anyone is - have a look at joyfulbelly.com and see if anything interests or appeals to you.
INFECTION without causing any hardship to me or anyone else I avoid people and places at times. For example, I don't visit people in hospital unless that person would suffer directly as a result and no one else could do the visit. Avoid needing to go in public toilets as a general rule. Avoid populated places when there's flu, norovirus about, and avoid friends who are grannies while their little ones have chicken pox, measles, mumps, whooping cough etc. Nothing drastic or extreme, just plain taking care not to come in contact when it can easily be avoided with just a bit of planning.
STRESS - I try to avoid this by just doing, and planning to do, what seems right for me and harms no one else. And I don't bother much at all about what I can't change, at the same time I try to be alert to what I couldnt change before, but can change now.
I still end up wringing my hands and feel like crying at times! Life is life still and we need each other to make it good.
I used to think my mercury amalgam fillings triggered it, but now leaning more towards parasites. I had contracted an infection from my dog around the same time my liver started showing signs of trouble. I was completely covered in a rash. Maybe they never really disappeared....by the way I still 3 years later have the identical itch around my ankles at times. I get rid of that easily with the cream I was given. When the itch acts up my liver aches.
I didn’t do any of you mentioned. non of my family has pbc but my mom had autoimmune disease. I think mine is from getting recurrent UTI in childhood
I think mine started because of 8 years worrying constantly because of work stress and family stress. It was just too much for too long. I’m away from both stress agents now and happy.
That sounds familiar, unfortunately. I’m glad you’re in a happier situation now
It interests me that you say yours "started because of..." That seems to me the best way to describe the beginning of what we now know is called PBC but didn't know before that we may have it. Well done getting away from the stressors! We know PBC can't be stopped but we sure can stop being our own worst enemies?
I have none of those things so no!
Hair loss ? Pbc or urso?
PBC and hair loss/thinning?
PBC 
Travel Insurance and PBC
