My gastroenterologist, Dr. Yinka Davies, is a PSC expert. In fact, she studied under Dr. Kenneth Cox, the doctor who discovered the use of vancomycin for PSC!
Since Dr. Davies is familiar with vancomycin and regularly prescribes it for her PSC patients, she suggested I try it. At first, I was hesitant because it was only suspected that I had PSC—I had no official diagnosis at the time.
But after she explained her thought process, which I outline below, I wholeheartedly agreed and couldn’t wait to start it.
Why My Doctor and I Decided I Should Try Vancomycin
At the time my GI suggested vancomycin, I was in a terrible ulcerative colitis flare. No medications were working—not even Remicade, which we had increased the dosage and frequency. I was honestly ready for a colectomy, and I had told this to my GI.
She offered one more potential solution: oral vancomycin. Not only has vancomycin helped stop the progression of PSC and return elevated liver enzymes to normal in many patients, but it has helped manage their IBD symptoms as well.
Vancomycin’s Relationship with PSC and IBD
My GI explained that I could temporarily try vancomycin and see if it helps my IBD symptoms and reduces my elevated liver enzymes. Ultimately, trying vancomycin would help us figure out if I had PSC. Here’s why:
If I start vancomycin, and in six to eight weeks, my liver numbers return to normal and my flare has gone, it most likely means I do have PSC and vancomycin is working by helping both my PSC and IBD.
But if I take vancomycin, and in six to eight weeks, my liver numbers are still elevated and I’m still in an awful flare, it most likely means I do not have PSC because there was no PSC for vancomycin to treat.
I agreed to this because it would help us avoid an invasive and potentially dangerous liver biopsy.
My Positive Reaction to Vancomycin
I started taking the ANI Pharmaceuticals brand of vancomycin (click here to read more vancomycin best practices) and exactly at the six-week mark, my flare vanished. I no longer had uncontrollable bowel movements, intense abdominal pain, or bloody stools.
And even better: my liver enzymes had returned to normal!
I had my life back! I could finally take a 10-minute car ride without laying towels down on the seat in case I had an accident. I could stop missing so many days of work. I was free. At this time, vancomycin was the only medication I was on, and it absolutely helped my ulcerative colitis.
This fact also meant it was extremely likely that I have PSC. Ultimately, taking vancomycin helped me get my unofficial PSC diagnosis. (I call it unofficial because I had not yet had a liver biopsy.)
What Happened When I Was Given the Wrong Brand of Vancomycin
After a few months of this newfound freedom, I picked up my monthly dose of vancomycin at the pharmacy. At the time, I did not know that only certain brands seem to be effective for PSC patients, and my pharmacy had ordered me a different brand.
I unknowingly took this non-ANI brand, and I immediately flared. I started having accidents again and the bloody stools returned. I called my GI, and she explained the brand issue. I stopped taking that brand and fixed the problem with my pharmacy. Once I was back on ANI, it took me another six weeks for it to start working (just like the first time), but then, I felt great again!
An Unexpected Hospitalization
Strangely, in June 2018, I felt a flare coming on. Even though I was on the ANI brand, I knew my ulcerative colitis was acting up.
Two months later, in August 2018, the flare became unbearable and my mom drove me to the hospital. I stayed in the hospital for five days, getting pumped with steroids and taking oral mesalamine. I had lots of testing while I was there, including a colonoscopy, which showed that my entire colon was entirely impacted.
Two Theories for My Unusual Flare
To this day, Dr. Davies isn’t sure how I flared; she explained that it’s quite unusual for PSC patients to flare while taking ANI vancomycin. One theory is that vancomycin impacts my body slightly differently after taking the incorrect brand earlier that year. Another possible reason is simply that every case of PSC is so unique and this was simply how the cookie crumbled for me.
I did have to start Entyvio infusions to help me get back into remission. To this day, I am on both Entyvio and ANI vancomycin. I feel the absolute healthiest I have ever been in my life! Since this hospitalization in August 2018, I have not flared once. This combination therapy seems to be just what my body needed.
Most PSC patients on vancomycin do not need additional medications. For some reason, I do, and I am okay with this because now, I’ve been in the longest remission I have ever experienced.
Living with an Unofficial PSC Diagnosis
After my hospitalization and starting the combination therapy of vancomycin and Entyvio, I was happy and healthy once again. Although I was still technically living with an unofficial PSC diagnosis, I was content with that at the time.
Read part 4 to find out why I later decided to pursue an official PSC diagnosis with a liver biopsy.
Read the Rest of My PSC Diagnosis Journey
