Newly diagnosed PBC

[Exhaustedfairy44]

Hi everyone. I was told on Monday that I have PBC. I'm still undergoing more tests to check for overlapping AI diseases as I match symptoms of several. Then in a couple of weeks I have a follow up consultation to discuss everything and have a Fibroscan done to see what stage the disease is at.

Is this sufficient enough to tell this or should I insist on an actual Biopsy being done? My consultant says this is a safer and better way to stage/check the liver as it measures the stiffness of the whole liver but everything I've read so far online from other PBC sufferers say they've had an actual biopsy to grade.

Thank you

[TanGram]

Hi EF44, I am pretty new in my diagnosis of PBC. I too had symptoms of overlap. We did an ultrasound first, those looked pretty good, but my Hep wanted to be sure, so we did the biopsy. No AIH, and liver was maybe a stage 1, if that. I felt better doing the biopsy. It's not a big deal. I didn't even get sedated. It's like a glue gun type instrument with a long thin needle that they push in your liver through the front right side, 3 times, like a staple gun lol. Sounds a little midevil, but was really nothing major. ...for me anyway. I found this group and it has helped me tremendously!! I had so many questions about symptoms, procedures and meds. This place is like home for PBCrs. Feel free to follow me and talk, I'm just a little a head of you in diagnosis.

Laurie 😁

[Stub007 in reply to TanGram]

I am 82 years old, male, stage 3, and I think your advice is right on.

[Kakey]

Welcome Exhausted fairy. If your blood test results show that you have PBC that is enough for a formal diagnosis, they would say there is no benefit to biopsy. It's definitely not the norm here in the U.K., although I had one due to my particular situation.

[gwillistexas]

My hep isn’t quick to do biopsies unless he see a need. I was diagnosed in 2017 by various labs. Fibroscan at diagnosis to measure for stiffness and have repeated yearly. Last year my ALP went up and my fibroscan score did as well. He then ordered biopsy. I’m glad I had it because the radiologist took several specimens. Report showed stage 2 with a small area stage 3, which the fibroscan would have not picked up on that. In fact my fibroscan score indicated stage 3. If he says another biopsy I’ll do it. Very easy procedure for me. Good luck to you.

[Chrisprio]

Please do join the PBC Foundation. They have a wealth of information that is really useful at the start of diagnosis and beyond and they can respond to any questions you might have. They were incredibly supportive and important to me when I was starting to navigate living with PBC. I wish you all the best, Cx

[butterflyEi]

Back in 2006 I had a biopsy but nowadays it is not necessary as specialists are able to diagnose without the risk associated with a biopsy. The PBC Foundation (free to join if you have not already done so) has up to date information on their web site and a lay persons guide to the EASL Guidelines on PBC.

[Exhaustedfairy44]

Many thanks for your replies. I'll trust that bloods and Fibroscan are enough at this stage then. He's definitely a very good hepatologist so I think I'm in good hands. Don't really know how to think or feel about it all at the minute. I suspected I had it but was a shock that I was right considering it's rarity. I've joined the PBC foundation and joined a couple of groups on Facebook too. Just want to know as much as I can.

[londonlop in reply to Exhaustedfairy44]

Hi, I just got diagnosed this week and am in similar situation to you. What Facebook groups did you join? Am looking for some. Thanks

[lilygrower]

Welcome to this group. I remember how shocked I was to learn that I had an autoimmune disease and how much there was to learn at first. It is so helpful to have a place for information and the experience found here. I've not had a biopsy yet. I was diagnosed in 2018 by labs and a fibroscan which I have every year. I have a hepatologist at Vanderbilt in Tennessee, and they don't recommend or do biopsies unless needed. Good luck and hang in there.