Tyler’s Journey
Two years ago today, my son started oral vancomycin for PSC (1500mg daily).
Today his liver function panel is NORMAL (ALP 88; AST 25; ALT34; GGT 25).
Today his MRCP (MRI liver/bile ducts) is UNREMARKABLE (no abnormal or significant findings).
Today his Fibroscan score (liver fibrosis/stiffness) is NORMAL.
Today his colonoscopy for Ulcerative Colitis is NORMAL.
Today his IgG4 is mildly elevated (111).
It has been a daunting journey.
Tyler was in his senior year of high school when he was diagnosed with UC/PSC just over 3 years ago. His labs at their worst were: ALP 461; AST 209; ALT 485; GGT: 437; IgG4 232. The initial MRCP showed: mild intrahepatic ductal stenosis; wall thickening; probable fibrosis; mild pruning and beading. A liver biopsy ruled out auto-immune hepatitis overlap. The initial colonoscopy showed acute and chronic colitis.
Tyler was put on mesalamine for UC, which helped. Tyler was not offered any kind of treatment for the PSC because there is none. He was being seen/monitored by a university medical center (transplant) team. When the pruritis was bad, he took low dose naltrexone (prescribed by an integrative medicine physician). Nothing was improving and his numbers were getting worse.
It was on this forum that I found Cynthia Buness, Patient and Research Advocate for Primary Sclerosing Cholangitis, who told me about her work with oral vancomycin and the story of her daughter’s success with oral vancomycin. I approached Tyler’s Hepatologist about allowing Tyler to try oral vancomycin and was met with complete resistance to the idea. Next, I met with Tyler’s Gastroenterologist who spent considerable time explaining that PSC is a slow-progressing disease and Tyler is in the “early stages” so he would not prescribe oral vancomycin, instead he wanted to take a “wait and see” approach. Both the Hepatologist and the Gastroenterologist are well-respected and good doctors, they just did not fit with our goals for Tyler.
Cynthia Buness connected me with Dr. James Tabibian, a renowned specialist in gastroenterology and hepatology. I was able to consult with Dr. Tabibian about Tyler and my desire to seek some type of treatment. Ultimately, Dr. Tabibian put me in touch with Dr. Kris Kowdley (Liver Institute Northwest, Seattle WA). My research revealed Dr. Kowdley to be internationally recognized as a clinician, educator and researcher in liver disease. When Dr. Kowdley took over Tyler’s care, it brought a sense of relief because he was willing to invest in Tyler. While familiar with oral vancomycin, Dr. Kowdley was not eager to implement its use at that time, but he did listen and left it on the table for later talks. Over the next 8 months, Dr. Kowdley utilized other treatment protocols but Tyler did not respond as he would have expected. Dr. Kowdley agreed to a trial of oral vancomycin which Tyler began on July 8, 2021. Two years later, my son is able to enjoy life and feels good thanks to Dr Kowdley.
The takeaway…don’t give up hope and continue to learn about the disease and your options, then find a physician who is a forward-thinker willing to work WITH you.