I had tests done on March 9th while we were in Phoenix and I had my hepatology follow-up yesterday. Figured I’d better wait to share the news until I talked to my doctor to be sure I’m interpreting things correctly.
I started on Ursodiol in November 2025. My own self-pay bloodwork in January 2026 showed that it is working to lower my liver enzymes. The Mayo tests showed the same thing. Nice to have the double-check. The drug hasn’t been shown to slow disease progression, but it may help prevent or manage some potential near-term symptoms or complications. I’ll take it!
This liver disease progresses by causing scarring, or fibrosis, to the liver tissue. The disease has 4 formal stages, measured by the amount of fibrosis. Back in July 2025 my biopsy showed “early stage 2,” but biopsies are unreliable to a full-liver staging due to the tiny sample they evaluate. Usually I would have had some kind of other staging test by now, but my hepatologist added a MRI (MR Elastography) to the March 9th imaging so we could finally get a true picture. Given my right liver lobe was biopsied and most of my duct damage seems to be in the left lobe, we were expecting my staging to be worse overall than we had been told prior. But the result was the opposite. My fibrosis was measured at 2.05 kPa and “normal/no fibrosis” is 2.5-3.0 kPa. So my liver is much healthier and I’m at an earlier stage in the disease than we had expected. It is huge, positive news. PSC progresses at variable rates in different people, but on average patients add 0.03 – 0.05 kPa to their MRI-measured stiffness per year. If I follow the average, it’ll take ~30 years until I get above “normal.”
Lastly, the reason I’ve been having these MRIs every 3 months is due to a small blood clot that was created by the July 2025 biopsy. I’ve been on a blood thinner to get it to go away. I’m happy to say that it has indeed resolved and I no longer need to take that medication.
Next medical steps for me are to figure out how to schedule an “anchor” month in Jacksonville when I can get all my annual testing completed. I’m hoping it can be in August, but I need to work through a few things before it can be finalized.
One response to “Good news from Mayo Clinic”
Why didn’t I read this post sooner?! Carrie, I am so incredibly happy for you about this news! Totally makes my day! Looking forward to having a catch up chat before long. You must just feel an immense sense of freedom and relief! I can’t stop smiling.