Hi everyone, does anyone else have any close relatives with PBC, my mum also suffered from it.

[scottiegirl]

[jenny66]

Hi scottiegirl, my mum also had pbc, i was diagnosed in 2011. I never told my mum i had pbc as she was at end stage of the disease. She passed away in 2012. I have only just told my siblings of my diagnosis but still cant tell my kids i have the same disease they watched their granny die from.

[NotorDJP]

My mother had PBC and lived for 15 years after. However, she did not die of PBC, she died of something else. My mother's health was poor when she was diagnosed with it, but she did well on, what at that time, was Actigall. I don't know what stage she was in when diagnosed, I don't remember. I do know she was doing relatively well with it when she contracted the neurological disease that took her life. What stage was your mum diagnosed at, jenny66?

[jenny66 in reply to NotorDJP]

mum was diagnosed with early stage, had it for 15yrs.

[scottiegirl]

Fully understand that Jenny I watched my mum die from liver failure. I.m not diagnosed yet awaiting ultrasound and appt with gastro Dr, still in shock as only found out last week I may have it, have had fatigue and joint pain for past 18 months, now have abnormal LFT.s, believe it can run in families usually mother to daughter

[jenny66 in reply to scottiegirl]

I know what you mean, its a big shock. I was attending doctor because of heavy bleeding. Routine bloods showed abnormal LFTs, these were repeated 3 or 4 times, abnormal everytime. Then got a positive Ama before getting refered to liver clinic. Have you had your AMA done yet?

[NotorDJP]

Just to clarify, her health was poor, but not from the liver entirely, or even mostly.

[scottiegirl]

Strange, my mum also had it for 15 years

[NotorDJP]

I am AMA positive, yes. I am waiting on my biopsy on the 21st. That is the track of diagnosis in the US. My GI told me that I had it, we are just staging at this point.

[scottiegirl]

I/ve just had bloods done again, not sure if AMA was one of them, suspect it may have been, waiting on results.Will be seeing GP next week so should know more then.

[jenny66 in reply to scottiegirl]

Scottiegirl, good luck with ur GP app. Let me know how it goes. Hopefully you wont have to long to wait on your gastro app.

[June9961]

Hi, my sister had pbc and lived for 15 years after having a liver transplant. I have had pbc for over 15 years and my blood results and symptoms have recently got worse. Never been told a stage by the consultants tbh dont really want to know, just want to enjoy life and dwell on what might be.

[Hidden in reply to June9961]

Good on you JUne9961.

My thoughts exactly, I have no desire to know whatever stage I may be at with PBC (I was diagnosed with symptons, the bloods and postiive AMAs Dec 2010). I've never had a biopsy (I am in UK) and have no desire to.

I would say I am in pretty good shape, much better than I was during 2010 pre-urso and currently only know I have the one sympton - itching. My bloods have improved over time.

I have a daughter in her late 20s. I've no inclinations of going on about the possibility she could develop PBC herself, why worry about something that may never be? For all I know my late mother (she died aged 43) could have gone on to have PBC.

To add further and not about PBC my year younger sister (she is almost 49) had a brain haemorrhage later last year and she is still attempting to make better progress after all these months having survived the bleed and surgery. Our late mother died with a brain haemorrhage. Apparently you can be screened if 2 of your first-line family were affected by this but I have no inclinations to go through anything like this to find out there is a possibility that I have some anuerysm lurking about. I just do not want to know and nor does my brother.

[June9961]

Well done Peridot, you have the same mind set as me. My mum died of breast cancer aged 44 and who knows she may have had pbc. You would worry yourself to death if you dwelt on these factors. As it was because of our family history with breast cancer I was told to have a bi lateral mastectomy. I have therefore decided that since most of my family has been decimated by cancer and pbc to live for now and worry about things when I need to.

[ZiggyBean]

My mother has it as