I’ve been lucky in my journey living with primary biliary cholangitis (PBC). Within three months of starting Ursodiol (ursodeoxycholic acid), the first line treatment for PBC, my liver enzymes normalized. Since then, I’ve continued to respond appropriately to Ursodiol and have not required additional treatment.
I was 31 at the time of my diagnosis, which is not the standard age for PBC diagnosis. I was very young. Though studies have shown that patients diagnosed young tend to have far more aggressive PBC, I have remained consistent. I recently had a liver scan done that still showed I was still in Stage 1, thankfully. Because of my good prognosis, my hepatologist has me get blood work every six months to monitor my liver function, as well as a yearly appointment with him.
When I was at the 2025 U.S. Patient Conference for Friends of the PBC Foundation, I learned that all patients, no matter their age, should have an initial bone density scan at diagnosis and then routine testing to check for bone loss. So, I set my mind on having my first DEXA scan ordered at my next hepatology appointment, despite my previous attempts requesting one being unsuccessful.
I have seen two different hepatologists since I was diagnosed with PBC. I have asked both about obtaining a bone scan. I’ve heard multiple times “You’re too young” or “That’s not something to worry about until you are older.” But when I asked this time, I told my doctor that a PBC specialist told me that I should be having bone scans routinely, and should have already had one done per the PBC treatment guidelines.
I’ve always felt like this physician tries to prove he knows more about PBC than I do. But I’ve always felt like I knew more about my disease than he did. Yes, he’s a liver specialist, but he isn’t a PBC specialist. Due to my insurance, he’s the only provider available for me to see. (Last month he told me he is retiring next year. I was very happy to hear it. However, I will be seeing his nurse practitioner on my next visit, in November 2026. If I don’t feel comfortable and confident with her, I’m going to keep searching under my insurance coverage and find a provider who is highly rated and experienced with primary biliary cholangitis.)
To my surprise, my doctor went ahead and order the bone density scan for me, and didn’t try to argue with me about it this time. I got lucky and there was an opening the next day.
Out of every test and procedure I have had performed for my PBC, this was by far the easiest. I just had to lay there for about 10 minutes and enjoy chatting with the radiology tech, who was near my age.
My results came back that night showing mild bone loss and osteopenia, or loss of bone density. My hepatologist reached out to me to give me the results and then suggested my primary care physician (PCP) should recommend treatment, as he was not as familiar with treating bone issues. My PCP quickly reached out and recommended I start taking a calcium vitamin each day, as well as eat more foods that are full of calcium. He also recommended I focus on weight bearing exercises, such as resistance training.
My goal for 2026 is to find a weight bearing exercise that my body can tolerate. I have rheumatoid arthritis and fibromyalgia, and sometimes barely doing anything can still take a toll on my body. I also want to starting eating more calcium-rich foods, such as leafy greens, almonds and almond milk. I’ve been a vegetarian for over 20 years now and my body doesn’t always respond well to dairy. So, I’m hoping I can find alternatives that work for me.
I hope that my experience can encourage you to feel empowered to advocate for yourself and seek the best and proper treatment that can be provided. At the end of the day, we are our best advocates, and we have to do whatever it takes to make sure we are heard and receive appropriate treatment.
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