Vancomycin for PSC

If you’ve heard of vancomycin’s amazing potential for PSC management and want to learn more about the drug, you’re in the right spot. This page covers four main topics:

1. How vancomycin works to help manage PSC
2. Five factors that impact vancomycin’s efficacy
3. Safety, side effects, and vancomycin-resistant bacteria
4. Best practices when taking vancomycin for PSC

The liver and the gut are intimately connected by the gut-liver axis, which refers to the complex anatomic connections and physiologic interplay between these two organs. The microorganisms in the gut play a crucial role in these interactions.

Oral vancomycin is an antibiotic that is not absorbed systemically, which means it acts only in the GI tract. It prevents a certain class of bacteria, called gram-positive bacteria, from building cell walls and reproducing.

Because of this, oral vancomycin alters the gut microbiome. Through mechanisms that are not yet understood, this appears to reduce inflammation in both the gut and the liver. Researchers believe vancomycin may also have a more direct immune-modulating effect on these organs.

This could explain why many PSC patients who also have IBD often see a reduction in their ulcerative colitis or Crohn’s symptoms. This correlation suggests that PSC is somehow tied to the gut microbiome.

Just like any other medication, vancomycin is not guaranteed to work for every PSC patient. Although most PSC patients tend to respond well when all the best practices are followed, it doesn’t work for everybody.

Dr. Cox and other researchers discovered there are at least five factors that impact vancomycin’s efficacy and play a role in vancomycin’s best practices. Here are those five factors:

1. Patient Phenotype

Most PSC patients also have inflammatory bowel disease, but a small handful do not. If they have IBD, do they have ulcerative colitis, Crohn’s, or indeterminate colitis? 

Vancomycin has mostly been studied in patients who also have IBD, so it’s unknown how effective vancomycin is for PSC patients without IBD.

2. Patient Age

Is the patient pediatric or adult? Vancomycin has anecdotally helped both children and adults, although most papers and case studies have focused on pediatrics.

3. Stage of Disease

What stage of PSC does the patient have? Early stage or late stage? How much fibrosis or cirrhosis is already in the liver?

Although vancomycin seems to be most effective in PSC’s earlier stages, there are stories about vancomycin reversing fibrosis in late-stage patients, like Ellery’s story or Emily’s story.

4. Vancomycin Brand

What brand of vancomycin is the patient taking? PSC patients have anecdotally reported that the ANI Pharmaceuticals, Lupin, and Firvanq (liquid) brands tend to work well, while some other brands tend to not work as well or at all. (See the Best Practices section below for more information about brands).

5. Vancomycin Dose

What dose of vancomycin is the patient taking? Are they taking the right amount for their unique situation?

The most common dose is 500 mg 3x per day. However, some patients respond better to a higher or lower dose, and adjustments should be considered if the patient weighs less than 30 kg. Work with your doctor to find the right dose for you. (See the best practices for more information on dosing).

An important aspect to consider before starting any drug is its safety and potential side effects. Lucky for us, there’s good news!

Vancomycin Safety

Some doctors feel uncomfortable prescribing vancomycin for their PSC patients because patients need to take this antibiotic long-term. However, Dr. Kenneth Cox, the gastroenterologist who discovered vancomycin can help PSC patients, has been successfully treating PSC patients with vancomycin since 1993!

Long-term studies are needed to provide further clarity on this. But as of now, vancomycin for PSC is generally considered safe.

Vancomycin Side Effects

Oral vancomycin has not been associated with any significant side effects. Since vancomycin is only absorbed in the gut and not systemically, side effects are minimal. Of course, any drug may cause things like rashes or headaches, but this isn’t common in the PSC community.

As Dr. Yinka Davies stated in a vancomycin Q&A, “We see doctors readily try drugs like Remicade, which has been associated with lymphoma. But here is a drug (vancomycin) that hasn’t been associated with any side effects, and that has worked well.”

She brings up a solid point.

Vancomycin-Resistant Bacteria (VRE)

A common question patients and doctors ask is if PSC patients will develop vancomycin-resistant enterococci bacteria (VRE) and become immune to vancomycin’s benefits. In fact, the fear of VRE is a common reason why doctors won’t prescribe vancomycin.

I connected with several gastroenterologists and PSC researchers, and they haven’t heard of any PSC patients reporting symptomatic VRE since Dr. Cox started prescribing in 1993!

Of course, there is no way to guarantee a patient taking oral vancomycin will not develop VRE. But personally, I much rather take a chance on vancomycin and have a low risk of developing side effects or VRE than not take vancomycin and have a high risk of cirrhosis, liver failure, or transplant.

From the experiences of people in the PSC community, we’ve heard that there may be several best practices that increase the chances of vancomycin working for you.

Please note that since there have not yet been any randomized controlled trials involving placebos to study vancomycin for PSC, there are no official standards for treatment; the following guidelines are pulled from anecdotal experiences within the PSC community, my personal experience, and the small trials completed by Dr. Cox and Stanford.

1. Be Aware of Brand Differences

PSC patients have anecdotally reported that certain vancomycin brands are effective, while other brands do not help manage their symptoms. I personally flared when my pharmacy switched my brand to Akorn. You can read about that here. (Please note that this does not necessarily mean your body would react the same way.)

From what I’ve heard within the PSC community, the ANI Pharmaceuticals brand commonly seems to be effective; other patients have stated they responded well to Lupin and Firvanq (liquid). I’ve heard some patients mention online that they didn’t respond to brands including Akorn and Alvogen.

Remember, this is simply anecdotal. In no way am I saying that a particular brand will or will not work for you. Vancomycin for PSC is very patient-specific and it may take some trial and error to find the one that works best for you.

If your doctor has agreed to prescribe you vancomycin, try to access the ANI brand first.

Please note: even with the ANI brand, some patients began experiencing a return of symptoms in mid-2019. These symptoms resolved after the patients began opening the vancomycin capsules before swallowing them. Read more about this and watch a demo video in the “Open the Capsule Before Swallowing” section below.

Why does brand matter?

When vancomycin is used for its original purpose of treating C. diff infections, brand doesn’t matter. But, for some reason, the brand can make a big difference when vancomycin is used to manage PSC. 

Researchers and advocates theorize that there is something different about the different brands’ capsules or coating, which can affect how effectively the vancomycin is absorbed and where in the GI tract it is absorbed.

2. Find the Right Dosage for You

The standard dose of vancomycin, as first prescribed by Dr. Cox, is 500 mg 3x per day when the patient weighs more than 30 kg (66 lbs.). If the patient weighs less than 30 kg (66 lbs.), the standard dose is 50 mg/kg/day.

For example, some patients see a reduction in symptoms when they take 1,000 mg 3x per day. Other patients do well on only 125 mg 3x or 4x per day.

Some doctors start their patients on a higher dosage and reduce the dosage over time to see if the patient remains normalized on the lower dose; reduction sometimes works. According to Dr. Cox, most patients for whom he attempted to stop vancomycin therapy had a return of symptoms and the patient had to get back onto the drug to maintain remission.

Ultimately, dosage may be patient-dependent. Talk with your doctor about what dose is right for you, but understand that you may need to experiment. If you experiment with different doses, try to change only one variable at a time. For example, don’t change brands at the same time! If you control the variables you change, you will better understand what is your optimal therapy.

What is the “Stanford Dosing Protocol”?

The Stanford protocol suggests starting at 500 mg 3x/day for patients who weigh more than 30 kg (66 lbs.) and to increase the dosage until the patient’s symptoms normalize. For children under 18 who weigh less than 30 kg, the Stanford protocol suggests 50 mg/kg/day. The most common dose is 500 mg 3x per day, though others respond better to a higher or lower dose.

3. Open the Capsule Before Swallowing

During the summer of 2019, PSC patients reported that they had begun to flare, even when their vancomycin brand and dose had not changed. 

These patients soon discovered that if they twist off the cap of their vancomycin capsule and swallow the pill this way, their flares disappeared, their liver numbers returned to normal, and vancomycin was effective once again.

So today, regardless of vancomycin brand or dose, many patients (including myself!) remove the cap to maximize the bioavailability of the drug and help absorb the medication as effectively as possible. Check out this 2-minute video to learn how to remove the cap!

Why does opening the capsule make a difference?

We’re not sure, but we speculate that some patients’ intestinal tracts may not effectively access the active ingredient through the capsules when the cap is on. The best practice is to open the capsules prior to ingesting. Then, after your labs are normalized, you can start experimenting with taking whole capsules if you wish. Be diligent about getting labs to see if you have any elevations any time you change a variable!

On a personal note: during the summer of 2019, I was taking the ANI brand but I didn’t flare. Still, I decided to start removing the cap of the pill to be on the safe side. Personally, I now experience hardly any right-upper quadrant (RUQ) pain! I’ve been taking vancomycin since 2018, and I had still regularly experienced this RUQ liver pain. But now that I open the capsules, this pain is far less frequent and severe.

4. Start Vancomycin as Early as You Can

Most of the research and case studies about vancomycin for PSC focus on pediatrics. With such a high success rate, this suggests that vancomycin is most effective when PSC is in its early stages.

However, this does NOT mean that there’s no hope for adults or for patients who get PSC diagnosed in later stages. For example, you can read an inspiring success story about a toddler with cirrhosis, this incredible story about a young adult with late-stage PSC, and my story (a young adult with early-stage PSC); all our lives were improved by vancomycin despite our various ages and stages of PSC.

5. Start Vancomycin Before Taking Other Medications or Biologics for your IBD

I understand that patients don’t always have control over this. However, it’s important to note that the small studies completed by Dr. Cox and Stanford only included patients who were not on any other medications. Therefore, there’s a chance that vancomycin might be less effective in PSC patients who are already taking additional medications.

Additionally, vancomycin has been proven to help manage Crohn’s and ulcerative colitis symptoms in PSC patients. If vancomycin works for you, you might not need any other meds for your inflammatory bowel disease! So start with the vancomycin first and go from there.

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Disclaimer: I am not a medical professional or affiliated with any pharmaceutical company. Any questions about your personal health and medications should be directed to your medical team. I am not recommending that you try vancomycin or any other medication, or that certain medications work for every single person; I am sharing my personal experience, other patients’ success stories, and resources to help spread awareness and provide clarity around this topic for those who want to learn more about vancomycin or want to talk about it with their doctor. Vancomycin may not work for every PSC patient. The information on this website, email newsletters, and affiliated social media channels is intended for general education only. Always talk with your doctor before trying any medication or changing anything in your health or treatment routine. Read more of The Comical Colon’s disclaimers here.