Does anyone have a parent or sibling with PBC?

The doctor tells me that PBC is not a genetic disease. He did say that although rare, there are families that have female members with PBC. I would appreciate any information on this as I have a daughter.

[zipitydoo]

I was advised to have my 3 teens tested for it when I got my diagnosis. none of them had a positive AMA so they have been left alone.

[Missboro in reply to zipitydoo]

Hi zipitydoo, i asked my gastroenterologist if my 2 daughters could be tested for PBC, he said they cant unless they started to have any of the symptoms. After reading your comment saying you were advised to have your teens tested for it i think i will look into this again as i do worry if any of them will contract it. Thank you for putting this comment.

[zipitydoo in reply to Missboro]

But does it mean they will never have a positive AMA ? Or could they be one of the few that have PBC but a negative AMA? Or will the AMA appear positive later on by something that triggers it? it still raises many questions so although they are ok at the moment who knows what will happen over the years. I am hoping that they will be tested on a regular basis for it now just in case.

[Hidden]

zipitydoo (great name!) thanks for the response and what a good outcome for your children. I thank you for this information.

[zipitydoo in reply to Hidden]

Thank you.

[Hidden]

Hi

My brother has PSC - effecting the large branches of the liver, also an auto immune condition.

L

[Hidden in reply to Hidden]

Louf, I've read that most PSC patients are men. This is interesting as most PBC patients are women. Sure wish there was more funding to research auto-immune diseases. Thanks for your response and best of luck to you and your brother.

Maureen

[Hidden in reply to Hidden]

Hi

Yes Auto immune research would be great.... My brothers consultant told me I am more likely to get thyroid and diabetes problems as these are auto immune related as well, he was a barrel of laughs.

Hope all is well with your daughter, I have a son and I suppose we worry about what we are passing on to them.

L

[Hidden in reply to Hidden]

Hi louf, they say laughter is the best medicine!

[Cristina_Romania]

your ID made me smile... I am thankful for my entire body, but certainly have a particular sympathy for my liver :D. My mother had PBC and also, on my mother's side, there have been a few liver patients about which I cannotestablish anymore whether it was PBC or smth else.

I am 31 (almost), I periodically "do" something for my liver (teas, some natural things), have had elevated bilirubin recently but just a bit - all that aside, I am not stressed. I know that, even if I will have PBC, as long as I don't have symptoms there's no use to take the classical medication. I do take care what I eat and drink, how I take care of myself - but that's the duty of just anyone I guess.

[Hidden in reply to Cristina_Romania]

Great attidude Christina, it will serve you well. My gastro doctor said, "Beware of herbal supplements and other than that, everything in moderation." I also have a great respect for my liver, It works 24/7 trying to keep me healthy. Thank you and take care!

Maureen

[Tumbleweed41 in reply to Hidden]

My Drs. mostly want me on the Prescription meds, but they have all agreed to my taking Milk Thistle, since I proved to them that it works. (for me at least).

I was getting frustrated with my numbers just barely going down every month, plus I hate scripts. My son-in-law suggested that I try the Milk Thistle since he works with a fellow that has Hep C and all he takes is MT (don't know his dosage).

I started out with 1,000mg/day > no side effects. Increased to 2,000mg/day > still ok. Leveled off at 4,000mg/day - 2,000mg twice/day. My numbers began dropping a bit faster and now I am holding in the normal range for AST & ALT and nearly normal for Alk. Phos. Have been taking the MT for nearly 3 years. - Still take the "drugs" but I only have to do blood work (labs) once every 3 months. We'll see what the next biopsy shows later this year (will be 5 years). (My dx was AIH with PBC overlap with the PBC at stage 3 in 2007).

Geri Ann

[Jtxx]

My mum had PBC (died 8yrs ago (aged 57) 12yrs after liver transplant.) Her older sister (annscot) also has PBC. I have AIH/PBC overlap syndrome. I also have a daughter but unless she has symptoms I was advised not to go looking for anything as it can affect all sorts of insurance/mortgages etc. (she's only 21)

I was told it was generic but not hereditary.

I am also one of the unusual PBC patients who are AMA negative which means that my daughter might be the same so testing might not show up anything anyway. I will need to ask my doctor if my mum was AMA pos or neg. (same family doctor).

I keep her up to date with all the info so she is very aware of the early symptoms. I hope and pray that she'll not be affected. x

[Maggs3petts in reply to Jtxx]

Jtxx

I was told that too - it is generic but not hereditary. I was diagnosed with it in July 2008 and my sister was diagnosed with it in November 2008. We have a brother who has a different liver condition HSP but not PBC. My sister has diabetes. I don't but I have almost everything else there is including scleroderma and raynauds - there's a list on my profile. When I was diagnosed my Consultant who is a lovely lady was very concerned that I didn't appear to be taking in what she was telling me. But I just told her, "Its one more." That's it with me - its just one more. Not trying to trivialise it or anything but I try to laugh and joke about it all because otherwise - well, I've no idea where I'd be. She did tell me a liver transplant would be effective but I could only think, "Yeah I keep a spare one in the freezer - doesn't everyone." I try to use my humour where I can in all my conditions because it really is the best medicine. (

[Hidden]

Jtxx, I'm so very sorry about your dear mom. I've read that a very small percentage of PBC patients are AMA negative. Sounds like you are in that group. The decision you made about your daughter is a good one, I sometimes wish I didn't know I was AMA positive. Ignorance was bliss, no going back now.

Sounds like you are coping well with your health problems, I wish you and your daughter the best!

Maureen

[plizzard]

i have a son and daughter and both been tested for pbc and all clear at this stsge no family members with pbc

[Hidden in reply to plizzard]

Hi plizzard, thanks for the response. Good news about your children. I too have a son and daughter. They will be tested if they ever experience elevated LFT's. Best regards.

Maureen

[Jtxx]

I agree with you lovemyliver, if my daughter or son (he's 19) develop elevated LFT's then they both know that it can be a sign of SOMETHING going on in the body but we have to remember that high LFT's happen for lots of other reasons as well. Not just PBC. Keep well. X

[Hidden in reply to Jtxx]

Jtxx, thanks for the reminder about elevated LFT's. My doctor also said there are many reasons for elevated readings and they can change from day to day, unrelated to PBC. Thanks!

[Annflanagan]

hi, my mam had pbc she died 11yrs this september from it, i have 5 sisters they were all tested none of them carry the gene, i have a daughter and a son, my son says he dosnt want to be tested hes 24 this june, what can you do i cant make him, my daughter is 26 in july she was tested but doc. carried out the wrong test so she has to have it done again Ann

[Jtxx in reply to Annflanagan]

Sorry about your mum. It really is crap sometimes! I have so many unanswered questions that only my mum could have answered. I wish I had paid more attention to the disease when she was alive but you know how it is when you are not living at home anymore. They say that it very rare for mother and daughter to be affected. That makes you and I VERY RARE. Is the GENE you talk about the AMA antibody or something else? x

[Annflanagan in reply to Jtxx]

hi, i dont really know to be honest when my sisters got tested thats what the doctors said, they dont carry the gene, i must ask the next time im there, when my mam died they said there was no chance her children could get it, well i proved them wrong pity i did, sure what can you do

[Hidden in reply to Annflanagan]

Ann, It's my understanding that 95% of PBC patients are female. My adult son is like yours, no interest in getting tested. My daughter will if tests indicate she should. Good news about your sisters and hopefully your daughter's testing will give you relief from worry. So sorry about your mother, a difficult loss. Best of luck to you and your family!

[Hidden in reply to Hidden]

My brother had/has PSC - diagnosed when he was 32ish, but obviously there for longer as he was taken into hospital then while they did tests. He had a liver transplant 2.5 years ago. I suppose you and your son just need to look out for signs of any liver problems and act quickly. Having said all that he is sure to be fine, I hope so.

[Hidden in reply to Hidden]

Hi louf, Best of luck to your brother. It's amazing to me how the medical field has advanced to where this type of surgery is more routine and safe. Yes, if any elevated LFTs both of my children will be tested. Best of luck to you!

[Annflanagan in reply to Hidden]

yea its an awful worry,but hopefully it will be all clear my daughter has a daughter herself shes 5yr, so as she grows vicky will have that worry, it never ends, also my mams neice her brothers daughter has lupas wonder is there a connection

[Jtxx in reply to Annflanagan]

As far as I understand Lupas is an autoimmune disease. My family have several automimmune diseases between them, PBC, raynauds, thyroid, vitilogo, addisons and scleroderma. I think once you have one you are more prone to others. I have 4 in total. Just got to deal with it and get on with it. It is a worry for our kids though but out of our control. x

[Hidden]

Hi Ann, I think there are cases where a mother and daughter both have PBC but my GI doctor says this is rare. I hope that, if this information is correct, it'll be of some comfort to you. Also, I believe that Lupus is another auto-immune disease. Best wishes to you and your family.

[Hidden]

Hi

My father passed away in 2003 and I was diagnosed with PBC in 2006. Looking back I often think my father had PBC as he had fatique, bad concentration, bad memory, depression and also very itchy skin which was very bad during the night. I mentioned it to my specialist and he said yes he probably also had PBC. Could anyone explain PSC to me. Thankyou

[Hidden in reply to Hidden]

Sophie, sorry about your dad. Females are more likely to have PBC but I guess a small percentage of males also test positive. I'm unable to answer your question about PSC, hope that someone else will. Best of luck to you!

[Hidden in reply to Hidden]

Hi yes my brother has/had PSC - which effects the bile ducts of the liver. The PSC website states - Primary Sclerosing Cholangitis is a disease primarily of the bile ducts, both inside and outside the liver (the ducts of the gallbladder and pancreas may also be involved) The walls of the bile ducts become inflamed (cholangitis). The inflammation causes scarring and hardening (fibrosis) that narrows the bile ducts. The bile is then unable to drain through the ducts accumulating in the liver causing damage to liver cells. Eventually, so much bile is accumulated, it seeps into the bloodstream. As a result of this long term cell damage the liver develops cirrhosis (hardening or fibrosis).

This is what happen to my brother, who had a transplant 2.5 years ago.... He is okish now, but it was a terrible 6 months before and after op. Although there were some great stories in the unit during that time.

I just feel we all have to try and keep as well as we can, transplant sounds great, but it was how ill he he wasbefore it happened - all the symptoms we suffer as well - I will never forget how his eyes were brown !!

Anyway this is not very cheerful for a saturday morning, sorry. My consultant expalined it as PSC effecting the large bile ducts and PBC the small branches

Lou

[Hidden]

Louf, I believe knowledge is good and you have educated yourself about these diseases. As one of our fellow PBCers said, "we are partners with our doctors." As you know it's a rare disease, there's little funding for research and many doctors have limited first-hand experience treating PBC. My gastro doctor probably gets his info off of the Mayo Clinic website. I doubt he has many, if any other, PBC patients. Knowledge leads to good questions and a better understanding of the doctors answers. Best of luck to you and your brother, a difficult situation for sure. Take care.

[Jtxx]

I am really lucky that I have the same doctor that treated my mum. He is so easy to talk to and will listen to what I say and take the time to answer my questions, to the best of his ability. He also has a couple of other patients with PBC but I think I am the only one with AIH/PBC overlap syndrome.

It's so frustrating at times because no-one has all the answers but the more awareness we can get out there about the conditon the better it will be for us all in the future. Even if it takes time it will benefit future generations. x

[Hidden]

Jtxx, Sounds like you are in good hands! A good doctor that you like and is familier with pbc ~ very hard to find. Good for you, sounds like your mom made your connection with this doctor possible. I'm doing the best to educate myself and other than having an uncurable disease, I feel rather lucky! My children are grown so I have the luxury of laying around doing nothing if need be. I know that's not an option for those who have young ones. Nice of you to blog as your messages are full of information and are uplifting to those who are feeling low. We all need a pity party once in awhile! Coping with knowing you have two diseases must be difficult but looks like you are coping with this in the best possible way. Thanks, and take a walk on the "sunny" side of the street!

[sammissh]

My sisters were both just diagnosed with PBC. What can I expect now? I am getting tested today.

[Marysla]

I have a sister who was diagnosed last year.