I had elevated liver numbers near the end of 2017 and my gastroenterologist believed I had the rare liver disease, primary sclerosing cholangitis (PSC). Unfortunately, the results of my procedures (including a specialty blood test and an MRCP) were normal. That’s why my GI and I decided that I try vancomycin to see if it lowered my liver numbers.
In this blog post, I share the unconventional path that led me to start taking vancomycin and how this medication not only improved my liver numbers but also gave me my life back!
Why I Started Vancomycin and How it Led to My PSC Diagnosis
At the end of 2017, I was struggling. I was in a horrendous ulcerative colitis flare and dealing with abdominal pain, urgency, and chronic fatigue. Despite increasing Remicade’s dose and frequency, it wasn’t helping anymore. Honestly, I was in so much pain that I was ready to talk about ostomy surgery.
However, my GI—strongly believing I had PSC—made an interesting suggestion. She recommended that I try vancomycin for a short period of time and see how my body responds. Ultimately, trying vancomycin would help us figure out if I had PSC or not.
How?
If I DID respond well to the medication, it meant I have PSC because the drug is doing its job by relieving me of my ulcerative colitis symptoms and lowering my elevated liver numbers.
If I DIDN’T respond to the medication, it meant I didn’t have PSC because there’s nothing for the drug to act on.
Why Did We Decide to Try Vancomycin this Unconventional Way?
Since my FIBROSpect specialty blood test and MRCP results were normal, my doctor believed that if I had PSC, it was likely in its early stages. This would explain why it was so difficult to diagnose.
I could do an ERCP or liver biopsy, but these procedures are incredibly invasive, and there wasn’t quite enough evidence to warrant doing these risky procedures.
Trying vancomycin for a few months was an unconventional yet brilliant way to avoid these invasive procedures that likely wouldn’t have anything to show AND to safely test the waters to see how my body responded to the medication.
What is Vancomycin and Why Do Some PSC Patients Take It?
Now, taking the antibiotic vancomycin for PSC is controversial. Vancomycin is normally prescribed to exterminate Clostridium difficile—or C. diff—which is a bacteria that causes diarrhea, stomach pain, fever, and even death. When doctors prescribe vancomycin for their PSC patients, it must be prescribed off-label since it’s not yet FDA approved for PSC.
But some doctors (like mine) are confident that vancomycin can stop the progression of PSC AND treat inflammatory bowel disease symptoms. (You can read the research papers about that in my PSC Hub here.)
Other doctors don’t believe there’s enough evidence supporting this, so they tend to prescribe their patients a drug called Ursodiol. (Urso is today’s go-to PSC therapy, but is very different from vancomycin and, according to studies, is not nearly as effective in stopping the progression of the disease. But that’s a story for another day).
To find out which was true for me, I agreed to stop Remicade and start Vanco. If, in six to eight weeks, I’m out of my flare, we can pretty confidently say I have PSC. But, if in that time I’m still sick, I likely don’t have PSC.
Psst! I have an entire PSC Hub dedicated to vancomycin for PSC. To learn about its science and research, read patient stories, view best practices, and much more, check out the PSC Hub!
Waiting for Vancomycin to Kick In
It took exactly six weeks for vancomycin to kick in. Some patients start to feel better within a matter of days, and most feel better within 3 months. The sweet spot is usually around six to eight weeks.
For me, waiting those six weeks was brutal because Remicade had stopped working and even prednisone had little effect on my flares anymore.
How I Felt After Taking Vancomycin for 6 Weeks
But after exactly six weeks, I felt a significant improvement in my ulcerative colitis flare! Suddenly I no longer needed to urgently run to the restroom. My abdominal pain vanished. I got my energy back. I didn’t have to keep calling out of work.
I returned to my doctor at that time, my prednisone cheeks finally returning to their natural state. She was elated. She said I looked healthy. I hadn’t felt this great in years.
What Vancomycin’s Results Meant for My Possible PSC Diagnosis
It was AMAZING NEWS that vancomycin put me back in remission. I was so happy and grateful to my doctor for putting me on vancomycin. But it also confirmed our fears of PSC.
The fact that I responded to vancomycin meant that I had PSC. However, since I hadn’t gotten the standard liver biopsy or ERCP, I was technically given an “unofficial” PSC diagnosis. But the fact that I responded the same way as most of my doctor’s patients and her mentor’s patients, she was extremely confident I had PSC. (By the way, her mentor was Dr. Ken Cox, the man who discovered the use of vancomycin for PSC back in 1993!)
How Does Vancomycin Help Manage PSC?
Vancomycin is believed to stop the progression of PSC. However, it’s not totally understood why. What’s been discovered so far from the patients who take vancomycin is that most won’t need a liver transplant or develop cholangiocarcinoma! In fact, in some patients, their fibrosis is completely reversed.
It’s theorized that vancomycin acts as both an antibiotic (by taking out bacteria that may play a role in causing PSC) and as an immunomodulator (modifying the immune system that attacks the liver in PSC).
Want to Learn More About Vancomycin for PSC?
I’ve developed a massive PSC Hub within The Comical Colon website dedicated to the topic of vancomycin for PSC. You’ll find research papers, helpful resources, tips to accessing vancomycin, exciting vancomycin advocacy projects I’m working on, and SO much more!
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