Hey y'all, I'm CoCo. I'm brand spanking new. I know this is mostly for England and the UK, but I'm from the states, in Kentucky. I have been having issues with my liver levels for years. The first gastro doc told me that there was nothing wrong with me even though my AST and ALT were around 145-160 and I tested positive for anti-mitochondrial antibodies at around 28. My new doc put me on Urso about three months ago. My AST and ALT are around 65 now, and I had my biopsy yesterday, so hoping for an a actual diagnosis soon. As far as symptoms, I have the itch. Some days with that are worse than others, but I think it's improved overall since starting Urso and Vitamin E. Anyways, just wanted to say hello and introduce myself as I'm reading through other posts.
Newbie here, just making introductions - PBC Foundation
Newbie here, just making introductions
Hello CoCo, Im Shannon & from the state's as well, Southern Indiana. I was diagnosed in 2012 at stage 2. Im stage 4 these days. Welcome to this forum but in the same breathe, sry you have to be here. You'll find that all of these lovely people are of great support & information for us PBC'ers. It tends to become a lonely disease because we look just fine. This is the place to come to ask quotations, vent, cry, or lift others spirits. Again, welcome ❣️
Pam from Galveston island Texas
Pam from Colorado. Diagnosed 2 months ago. Welcome 😊
Welcome to pbc.org.it is a small community but very reliable resources for pbcers.
I live in Frankfort Ky.
Hi CoCoMcD
Welcome to the group. As you have seen this group has a large contingent from the USA and there are also people from Canada, Australia, South Africa and The Netherlands as well as other countries. If you have not yet joined the PBC Foundation, free to join, the members section has a good deal of information which you may find helpful. You can find a link to the PBC Foundation through their icon above. In America there is also pbcers.org/ who are based in Texas. Both organizations have a presence on face book.
I am an "itcher" and have medication for it but I hope you will find your itch will continue to reduce now that you take Urso.
best wishes
Hi CoCo it's good to hear from you and hoping your biopsy result goes well. Keep in touch. Diane
Hi CoCo
I am in Kentucky as well. Welcome this is a great forum with people who understand. I hope you get good news from your biopsy.
Lisa
Hello and welcome to the PBC club Coco. We have members from many countries and offer support and try to help each other. There is a lot of empathy and knowledge here and we really understand how you feel. Best wishes. Diane from London
Hi Coco, though I have lived most of my life in Australia I'm also from Kentucky - Harrodsburg, to be exact. Welcome, but, as Shulsey says, "sorry you have to be here".
Di
I'm in Florida. Welcome. But someone else lease correct me if I'm wrong. I thought alt and ast was autoimmune hepatitis and alp and some me call it alk was Pbc
You're not wrong. My doc thinks I'm still in the very early stages, but because of three positive AMA's, he's fairly certain that I've got PBC. I tested negative for AIH.
Did you have a liver biopsy? What is your alp/alk ? I have pbc with aih. I'm early as well. I hope that you are at least aih negative. I'm not really having to much trouble right now with my diseases as long as medical personnel doesn't respond with Hep A, B or C when I tell them I have autoimmune hepatitis.
My liver biopsy was Friday, still awaiting full results. My alp is 30. I have been tested AIH negative.
Hi!I am in NW Ohio and was Diagnosed in May.1st Stage on Urso.
Hi Coco,
I am Kathy and live in Colorado. I am one month new to this site, but not new to PBC. Diagnosed in 2012. I am the only PBC patient my doc has and I had no clue about PBC organizations. Assumed that since I was told PBC was very rare that there was no organizations. Boy was I wrong! This site is such a blessing to us all and a wealth of information. Often what is shared here also helps our doctors! Welcome and best of luck moving forward.
Kathy - PBC, AIH, NASH, Sarcoidosis of the liver and Bariatric bypass. - Allergic to Urso
Hi CoCo, I'm from the States to. Was just diagnosed with PBC and have been on Urso for a month. I have quite a few other autoimmune diseases as well. It is very hard to have hidden disabilities! So many out there are judgemental of us. Looking at us and thinking we are just fine, but don't see how sick we really are internally. Going on 17 yrs I'm out of work now. Not because I want to be, but because my body just won't let me do much of anything else. I'm following you!
I know what you mean. I get those looks to especially when i park in handicap spaces. I have handicap plates but people assume im just using the plate when a handicap person is not with me. I have neuropathy in my legs and not supposed to walk more that 50 feet. Another invisible illness. When i talk to people and tell them i have an autoimmune disease they back up like they're gonna catch it. People can be cruel but you will get lots of help and understanding on this site. We all need to keep our chin up and leave it in Gods hands
I am also in the states. I am from Missouri. My doctors are in Columbia MO.
Lab Values and Fibrosis 
Sudden rise in ALP 
Hi, I have been told that raised ALT is associated with AIH/PBC overlap and not pure PBC.Does anyone have PBC and have raised ALT? Thanks 
Just diagnosed with pbc
Well....... Now what? 
