Hi! I am a 35 year old female. I was diagnosed officially with PBC at age 25. At this point in life I had a biopsy and found out I was already stage 2-3 fibrosis. Jumping forward ten years later I am now at the last stage and officially at cirrhosis. I have many symptoms now caused by the cirrhosis. Enlarged spleen, very low White blood counts, red, and platelets because of the spleen being enlarged. I get sick more easily these days. I have a lot of muscle pain daily. I’m constantly fatigued. I have heart issues and take blood pressure medication to lesson the chance of liver cancer. I have always been a quite healthy individual, never a big drinker and always treated my body pretty well. It is hard to understand why I was unfortunate to have been diagnosed at such a young age. The doctors think because of how progressed it is, that I had to have been developing it as a young child. I haven’t been able to find anyone who understands the fatigue that cirrhosis causes. Everyone always says oh, we’re all tired. That’s just life. I believe this disease is different though. Being so young and dealing with disease has been very hard for myself and my family as well. My faith has shown me that God has a plan for this and continues to strengthen my marriage and my relationships with my child and family. I Look forward to hearing from others about their experiences. Thanks for taking the time to read.
first time on here: Hi! I am a 35 year old... - PBC Foundation
first time on here
Hi! I'm Donna - I facilitate this support group for The PBC Foundation. Thank you for sharing your story and letting us see the journey you've been on. Were you on Urso from the beginning of your diagnosis? I too had PBC from the age of 35, diagnosed by a simple routine blood test actually by my gynecologist. After 20 years, I too progressed to cirrhosis, ascites, unrelenting itch and fatigue, and jaundice. I understand how devastating this can be for you as well as your family who stand by and watch, unable to help you. The fatigue and the itch are unlike anything we likely have ever experienced in our lives. Unless you have these you can't possibly understand. We all do though. Sharing how we feel -how even one day is for us, is how we support each other. Has your hepatologist talked to you about your MELD score? There is so much we can chat about. Let me know how I can help you.
Been on Ursodiol since I was 25. So for 10 years. I also have been on Ocaliva 10mg for about 5 years now Off and on. My MELD score seems to be doing okay for the time being. But I have my routine tests every 3-6 months now. Have esophageal varices now. Wow your experience seems a lot like mine.
I was diagnosed at 35 (52 now) but doc's think I had it for years previously so damage done. I too have the fatigue and its the one thing that has never improved and is slowly getting worse. Liver managed by 1st steroids then long term azathioprine, (for life) and now also benzofibrate. Ps. no one gets the fatigue unless they've experienced it. They just think you're tired 
if I had a £1 for every "I'm tired too !" Nothing like the same overwhelming dragging yourself through the day fatigue
So many of us can relate to this post - myself included. There is no way to describe how that feeling of just not being able to even walk one more step. Are you taking Urso? You said you were on benzofibrates now. I assume your liver enzyme numbers have improved over the time you've been on medication. I keep trying to convince myself that even the smallest amount of exercise has been shown to help with the fatigue. It's very hard to do on 'those days'. Have you found anything that does help the fatigue for you?
Don't react well to urso so benzofibrate. Bloods are amazing but I'm not. Specialist says they just don't have enough research to understand the fatigue. Wishes they could prescribe a pill for it.
In regards to how I deal with it I do "pacing" was taught the technique on a course for M.E. (they thought had that at 1st). If I didn't I get nothing done but also I go with the days were I wake and know its a do nothing day. Used to fight it and end up worse.
Highly likely I have PBC and scared it’s stage 4
Friends from Ireland 
Afraid there won't be a liver for me when time
Transplant 
Hello all
