Hi. I’ve recently had the diagnosis confirmed but have a problems for many years.
I also have the unfortunate problem that my liver makes stones in the intrahepatic ducts.
Anyone else have that problem. I noticed on the Mayo Clinic list of complications it is there. Just wondered how common this is?
Hi Jeanb47,
Welcome to this site. Sorry you have to be here but you found the right place.❤
Did they stage your PBC? Have you started URSO? I had elevated LFT's (liver function tests) way back in 2008 but they only did anything about it last year. Unfortunately with PBC there seems to be a learning curve with many Doctors. I hope you have a good knowledgeable one.
PBC effects everyone in different ways, some the same too, but other added autoimmune diseases (AI's) makes us all unique.
Join the PBC foundation on this forum. You'll find up to date information as well as lots of support.
I don't think PBC is common... Although it seems like someone new is being diagnosed and finding their way here everyday. About the secondary issue your having with forming stones, I'm sorry, I can't tell you anything else. But hopefully many will see your post and chime in soon.
It's a lot to digest.... this being diagnosed and wrapping our heads around that we're sick. But please know, they are doing a lot for PBC sufferers now. It's usually a slow go, and with proper medication, it slows the disease down even more. ❤
Nice to meet you.
Stella, KS. U.S.A.
DX PBC 10/16
DX RA 4/17
...other stuff too. But I'm OK. 🙌
Hi kilter
I was unable to take URSO because of violent vomenting. So that’s out. Fibroscan Number was 10 so think that’s stage 2/3?
Not sure what questions I should be asking yet.
Thanks for your reply
I’m from a EDMONTON Canada
Oh that’s not good. I was taken off Urso due to hives. Hope you have other options. Prayers 🙏🏻
I have itcy hives from PBC and Benedryl is my best friend. I've not heard of urso being the cause. wow.
When I stopped Urso, itch & hives went away. Have had no more.
Jeanb47,
There is another medication.. Ocaliva. Some who have not responded well to URSO have been put on it. However, you must find a doctor who is well educated in the PBC field and also knows something about Ocaliva dosing etc.
Are you in pain? How are you feeling?
Stella ❤
Hi Jean, I I have PBC for about 2 yrs now, my liver bile ducts now have small stones in them, Doctor said have to take them out, I take Urso and Ocaliva . I would talk to your doctor about ocaliva since you can not take Urso,
Thanks for your reply.
I’ve had two liver resections to remove the stones. This was before I knew I had PBC. last surgery was Oct 2014. But problem returned year later. Treatment that Doc is doing now is to do ERCP when I’m in pain to see if they can clean out the stones they can reach.
I’m not having much fun with this.
J
this is first time with stones for me , Doctor did not tell me how they will remove them, I have to have another MRI first . Nothing fun about any of this, My PBC caused me to have type 2 diabetes , so dealing with that also , all we can do is take one day at a time and get through day by day .
🙏🏻
Hi,
Stella gave good advice. Go to the PBC foundation- link above. Join the foundation ASAP. ( it's a separate membership from this peer support group)
You create a User Name and PW ( it's free). And then you will have access to current medical-scientific info about PBC.
As for what questions to ask, once you join the Foundation- log in and you will have online access to the latest "Bear Facts newsletter". Print it out - its got an 8 page insert with Questions to ask your doctor. Very helpful.
Hope this helps.
As Eileen says, go to the PBC Foundation page - link at the top of this page. There are email and phone contact details there, and you can talk to their trained advisors, who are lovely, as well as loads of info on site and more if you join - it's free. Also, do ask them about alternative meds, such Ocaliva ... also whether the vomiting on Urso is something that would go with time.
Again, are you seeing an actual PBC specialist? Lots of patients end up just seeing gastroenterologists, who don't know enough about PBC. Even some Liver consultants are not as good as they could be (one misdiagnosed me back in 2008, and caused a few years of grief until I saw a leading PBC Specialist who agreed with me - and my GPs - that I don't actually have PBC, but just test positive for AMAs - some people do). Always best to see a PBC specialist.
Hope this helps - NB the answers on here are a bit thin at weekends, you might get more responses if you post in the week.
Take care, Gritty.
Good luck finding a PCB specialist......we have none in Indiana. I do, however, have a great gastroenterologist who IS very well versed on PBC. I was diagnosed in 2000 at the very beginning stage of the illness because of him. It's now 17 years later (I'm 75) and still doing well. I have taken URSO for all those years.....first 5 a day then down to 4 a day. I was told it was a rare disease but I don't believe it since my sister was diagnosed in 2002 and another friend that is unrelated to me. The friend just died of this 6 months ago but she was in a later stage than I when diagnosed. My liver function Blood Tests have always stayed in the "normal" range, around 25. My sister, however, had much higher numbers. It's not a fun disease but I much rather be dealing with this then with cancer. At least the treatment for PBC is relatively easy (but expensive!) and you can live with it for many years.
Edmonton, Canada? Isn't that where the award winning, fantastic research is going on by Dr Andrew Mason at the University of Alberta? Think it is, unless I'm getting mixed up with somewhere else....
Yes. Dr Mason is from here. I’ve recently been referred to him 😀
He is a very approachable nice man
Recent PBC Diagnosis - Male
PBC Diagnosis, or COVID related
PBC Diagnosis
PBC diagnosis 
New to the group but not PBC. 
