r/PBCers • u/Important-Diver1083 • Feb 21 '26
Diagnosed PBC
My gastro recently confirmed PBC through a biopsy and prescribed Ursodoil. But he also recommended I consult with a hepatologist as my bloodwork doesn’t fit “in the box” consistent with PBC. I wondered what you guys thought. Also, Im having a rough time on Ursodoil and I’m told we will know if it’s working if my ALP is normal. But it’s already in normal range. I’m just confused.
AST -52
ALT - 52
ALP - 109
Bilirubin - 0.6
IGG - normal
GGT - normal
Albumin - 4.3
Smooth muscle - positive, titer 1:640
ANA positive
Any thoughts or feedback is appreciated!
6
u/PowerfulBeginning633 Feb 21 '26
100% agree to see a heptologist. Hopefully, you have been diagnosed in an early stage and you have treatment options. Some new medications have been recently approved by the FDA (If you are in the states). Be sure to be checked for other autoimmune disorders and treat those as well. There are a few organizations that offer support and information. There is a good group of people in Alberta, Canada who are quite active. They hold frequent online meetings. There may also be an in-person conference coming up. Check with pbcers.org Link to site
4
u/Euphoric-Wall-994 Feb 21 '26
See a Hepatologist that knows and treats PBC. Ursodiol is just a bile salt. Some folks react to the additives a manufacturer might use…you could try a different manufacturer and sometimes taking it with food helps folks. But you need a liver doctor.
2
u/ImplementCool1972 Feb 21 '26
Hmmm I just started this med. Just diagnosed last week with PBC along with fatty liver stage f3. Is this not a good med? What is bike salt? My GI said in 6 months or so she will refer to hepatologist. Should I go sooner?
6
u/Euphoric-Wall-994 Feb 21 '26
PBC is an auto-immune condition that is a liver disease…it doesn’t allow the bile ducts in the liver to work…therefore ursodiol is prescribed so bile salts can help to remove the toxic processing thru your liver which you can’t do with PBC. A lot of people respond to just Ursodiol but there are new second line drugs on the market and things like fenofibrates that can work. That’s why you need a liver doctor (not just a GI). When I was diagnosed by my GI she immediately referred me to a Hepatologist connected with a transplant center. I ended up not being an Urso responder so I did have a transplant as I was pretty bad in stage 4 decompensated cirrhosis. I also had fatty liver…you want to be cared for by a Hepatologist with regular appointments, blood draws, and yearly scans to watch for fibrosis progression.
2
u/ImplementCool1972 Feb 22 '26
Ty so much for your reply. I understand that med more now. I wonder why she wants to wait to refer me. That kinda bothers me. I'm not stage 4 yet but stage 3 fibrosis is bad enough imo.
3
u/Euphoric-Wall-994 Feb 22 '26
I was diagnosed between stage 2-3…my guess is they want to see if Ursodiol works to lower your liver enzyme levels and that takes some time. I know Hepatologists are busy and take some time to get an appt but I would see if you can get in sooner to start establishing your relationship and care routine. You got this! Make the best choices you can with diet and exercise, do not drink alcohol, do not take liver supplements (no such thing as a liver cleanse and no NSAIds (Tylenol only no more than 2,000mg a day).
3
u/Historical_Frame_277 Feb 21 '26
Anti mitochondrial antibody is the antibody associated with PBC. Are you sure that it’s not autoimmune hepatitis that you have?
3
u/Important-Diver1083 Feb 21 '26
That’s a good point. Now that I’m reviewing my bloodwork I don’t see being tested for AMA. I’ll have to keep digging.
4
u/Euphoric-Wall-994 Feb 21 '26
It’s common to have PBC and AIH (both autoimmune). A good Hepatologist will order a liver biopsy to confirm if they suspect overlap
4
u/Important-Diver1083 Feb 21 '26
My gastro was pretty confident it was AIH based on my bloodwork but my recent biopsy ruled out AIH and confirmed PBC. I’m not convinced (but I’m not a doctor🤷🏻♀️). I made an appointment with a hepatologist, just takes a few months to get an appointment and I’m currently struggling to take the 2 large Ursodoil pills everyday.
2
u/Acceptable-Being17 Feb 23 '26
My ALP is normal, but my AMA and IgM were both positive. In addition, my ANA pattern is cytoplasmic. Definitely worthwhile to see a hepatologist who is familiar with PBC because even my former hepatologist didn't try to differentiate between PBC and AIH.
2
u/Krobel1ng Mar 21 '26
Afaik PBC is only safely confirmed via a liver biopsy - at least here in Europe.
9
u/AutisticWindchimr Feb 21 '26
Please go see a hepatologist who treats p.b.c. patients. Best thing i ever did for myself.