When you were first diagnosed with PBC, what was your doctor's initial advice?

[MaddieHU]

What were the good things you learned at diagnosis? What worried you?

Share your experiences and thoughts in the replies below!

[sharonb285]

When I was first diagnosed 13 years ago, I was advised to take Ursodial. I was also about 100lbs heavier at the time which made me think it was fatty liver. I really never believed the diagnosis as it was all written in plausible language such as 'could', and 'may" rather than the more definitive 'is.' So, I didn't start Urso until stage 2 when I saw more physical evidence and had more tests. Currently, at stage 4,100lbs lighter, and regular MRI and blood tests, I am pretty stable. No itching, thank God!

[Smokin5520]

I didn't feel I was given much advise. I am taking URSO and losing weight, but other than that, I was told that I was at the cirrhosis stage of PBC. I am having a very hard time with depression for other reasons, so combined with this, I am not getting anything done, and my family does not understand. I will be seeing my PCP next Monday and see what she can do for me. I too have a lot of itching and insomnia.

Paulette

[shadowme2 in reply to Smokin5520]

I guess this post is a year old but I'll pipe in. When I was first diagnosed I was completely shocked, I've always been healthy with normal doc check-ups. I was sent to a Gastro because of abnormal Alp at 370. My appt lasted maybe 10 minutes and in that time was told I had Primary Biliary Chirrhosis. He asked if I drank, I said "sure" I love a few beers now and again. "Well I'll put you on Actigall as that's all that can be done" and "If you continue to drink you'll be in complete liver failure in 2 to 3 years and wont be eligible for liver transplant." I left there feeling sucker punched and in complete denial. I was also given option for biopsy which I chose to do before taking any medication. A month later with that being done it was confirmed so I started on Urso. Haven't seen or heard from him since. That was September 2017. I have labs done with my primary care doc every 3-6 months. I have her add direct bilirubin on there and everything is in normal range except Alp is 149 at last check a few months ago. Still having my occasional beers and still kicking. Don't get me wrong, I'm not advocating drinking, it's just what I choose to do. The depression get's pretty heavy at times. Mostly I feel pretty good (no itching, no pain, but certainly fatigue) and just try to stay busy and not over think this. Looking back I see he didn't even have the name right....I live near Grand Rapids, Mi and to my knowledge there are no Hepatologist's in this area. Hard to believe since the city is really booming in the medical field. Just trudging along on my own, eating good (I have a large garden, grow and store fresh veggies) and try to stay positive and active.