My PSC diagnosis story, probably like many of yours, was a long, messy, and complicated road.
To make it easier to consume, I’ve divided my PSC journey into six major components, with a seventh section to describe the PSC advocacy projects I’m working on. You can read each chapter summary in the table of contents below, or click on the links to read the detailed story of each section.
Table of Contents
1. My doctor noticed elevated liver enzymes in my routine blood work
Around September 2017, my gastroenterologist noticed I had elevated liver enzymes in my routine blood work. Read more about my strange blood test results.
2. I had three non-invasive tests to find the cause of my elevated liver enzymes
My GI had me do three non-invasive tests to find out what was causing the elevated LFTs, including a FIBROSpect blood test, abdominal ultrasound, and MRCP. The FIBROSpect and MRCP had normal results, but the ultrasound showed I had excess fat in my liver. Read about these tests here.
3. I started vancomycin to manage my (probable) PSC
In the effort to avoid an invasive liver biopsy, my GI put me on vancomycin (the ANI Pharmaceuticals brand) in January 2018 to see how I responded. After six weeks, my ulcerative colitis flare was gone and my liver numbers returned to normal.
This was a sign that I most likely have PSC. Since I responded to vancomycin in the same positive way her other PSC patients did, this served as an unofficial PSC diagnosis. Keep reading here.
4. Later, I decided to pursue an official PSC diagnosis
In January 2021, my curiosity got the better of me. I wanted to know for sure if I had PSC, because I didn’t want to be taking vancomycin if, on the off-chance, I didn’t have PSC.
However, at this time, I had moved to another state, and I needed to find a doctor who was willing to prescribe vancomycin and do further testing to confirm the PSC. It took me nearly a year to find a doctor who would help me since most doctors in my new state are not familiar with vancomycin. Read more about this long process.
5. I had a FibroScan to help diagnose my PSC
In November 2019, I had a FibroScan, which suggested I had stage 1 liver fibrosis. Read about my FibroScan experience.
6. I finally had a liver biopsy, which suggested I have PSC
In February 2020, I finally had my liver biopsy. My liver biopsy results were consistent with all Dr. Davies’ other patients with PSC on vancomycin: scarring but no active inflammation. This provided the diagnosis I’d been seeking. Read more about my liver biopsy experience and detailed results.
7. Check out my PSC and vancomycin advocacy plans and learn how you can get involved
I’m working on several advocacy projects to help make vancomycin accessible to the PSC community. Click here to get the details and learn how you can help!