Hereditary: Hi is it true having a close... - PBC Foundation

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Hereditary

ellesawyer profile image
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Hi is it true having a close relative with PBC means you are more likely to develop the condition yourself.

My Mum was diagnosis with PBC 23 years ago, she sadly passed away 6 years ago.

Lesley

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ellesawyer profile image
ellesawyer
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11 Replies

Hello ellesawyer.

I think it could be probable but it might skip a generation maybe if that is to be so?

I cannot say for myself regarding a close relative as my mother died when she was only 43 back in 1987 (nothing to do with liver). My gran (mother's mother) lived until she was 83 and at odd times I have wondered if she might have had PBC since I was diagnosed but then not so sure as she had blood checks when she developed anaemia in her late 70s and nothing came back as a positive except the ferritin. To my knowledge my only 2 aunties (dad's side) have never had anything like PBC and my mother was an only child.

ellesawyer profile image
ellesawyer in reply to

I had a blood test done last week and it showed that my GGT was above normal (10-45 ) my was 55, my Doctor did not seem that worry and told me to have another one done in a months time, but when I told her what my Mum had she was not sure what it was and I had to explain to her what PBC was?

in reply to ellesawyer

Hello ellesawyer.

My GGT is quite a bit higher than yours at 55 I can tell you. It was several hundred back in 2010 but has come down over time.

I don't bother too much these days. I know in PBC our LFTs once they become what is considered elevated or abnormal they are not expected to return to normal though that is possible. We apparently have a different scale with PBC that can be considered normal even if out of what is normal for someone without any liver (or bone) issues. You can actually have abnormal LFTs if you have a bone disorder as I found back in 2010 when I was informed by my doctor that he was going to decide if I had a liver or bone issue.

Zelda5 profile image
Zelda5

Did you have any other elevations in LFT's such as ALT, AST, and more importantly ALP? I think ALP is the only one associated to both liver and bone disease and an elevated GGT points more to liver. If a person has an elevated ALP then a GGT is often done to determine whether it's the bones or the liver that's causing the elevation. medscape.com/viewarticle/71...

ellesawyer profile image
ellesawyer in reply to Zelda5

My ALT AST are normal it was only my GGT that was above normal (10-45 ) my was 55.

Your GP will follow up your LFT tests if any are out of the normal range, I had mine followed for 3 months and only after then did he refer me to the hospital, for further tests when hey never returned to normal.

With your family history I am sure he could order the relevant tests or make a refferal to the hospital sooner if your worried.

Is it hereditary, it seems a genetic link is probable but with an environmental trigger so how closely is the link in relation to family members is not as far as I'am aware very clear but I may be wrong.

For me I'am one of 12 children, of a father with 7 siblings and a mother with 2, no one else in the large family have PBC, there are a couple of other auto immune issues but no pbc. There may have been way back in the history somewhere but it was not ever known and would probably have never been diagnosed in generations before them.

So I personally and this is just my view, think the link is a weak one and the environmental trigger is the one scientists should be looking at finding, unlike my family history for diabetes as this traceable through the family.

Wendy29 profile image
Wendy29

I have PBC/AIH - so did my mum. I recognised symptoms after I lost my mum - itching and fatigue, right side pain. By the time my mum was diagnosed, her liver was cirrhosed - she was 56 and died eight years later and was really poorly in that time. I have had the benefit of immune suppresive treatment so I thought my liver would be protected - it seems not quite the case.

In answer to your question, PBC is not 'hereditary, - but can be 'familial'. I have two sisters who tested negative. There is a link, doesn't have to 'skip' a generation. It means if your genes are similar to your mother, there is a higher probability of developing similar illness as I understand it.

I'd like to think I also inherited some of my mothers nicer things too - lol x

WendyMarie profile image
WendyMarie

What did you take an immune suppressive treatment for & what type did you take? Reason I'm asking is because I have MS in addition to the PBC. I too weekly IM injections of interferon for 12 years. During that time I was NEVER sick...not even a common cold! A year after I stopped the interferon, I get diagnosed with PBC, because the ALP reached 200. I often wonder if the interferon suppressed my immune system so it was not attacking the nervous system (which is why I was taking it) or the liver. Once I stopped it, the immune system began attacking the liver, hence, PBC. I asked my hepatologist why do PBC patients not take interferon to slow progression. He explained that it would not have the same beneficial effect with PBC as it does with MS.

eecos profile image
eecos

My mum has diagnosed 10 years ago with pbc and me a year ago. My sister has been tested and is negative.

liver-bird profile image
liver-bird

My grandmother, my cousin and her daughter all had/have Pbc like me. So whilst it is a comparatively rare condition, it is common enough in my family.

My mother, her sister and brother all had rheumatoid arthritis and another cousin had multiple sclerosis - all autoimmune problems.

Based on this, I think there is an hereditary link

Brummi profile image
Brummi

I have always understood it's not hereditary.

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