My attempt with taking Vancomycin & needing help

Question dear ones, family of or those with PSC who have experience with or know about Vancomycin. I have been taking 1,500 mg a day of Cutis Pharma VO now for two months and one week. So far my blood work shows no change and I do not feel any better. I would appreciate thoughts: Should I increase my dose or change brands? It is all out of pocket so I went with the $400. a month as opposed to the $1,000. a month form of Vancomycin (my extremely high co-pay) – or just stick with what I am taking for six months? What do you all know about this? My doctor will do whatever I ask. I’m so discouraged. Feel enormously disappointed. I want to give it the best chance before I stop and I know I have had this disease for almost thirty years so cannot necessarily expect I will feel better in a few months. But, since others have, it is hard not to compare my experience. My doctors do not know enough about VO to advise. Deepest gratitude.

Hi Susan. Sorry to hear the 1,500 mg of OV per day did not work for lowering the LFTs. I remember that you were saying at some point that the UC symptoms improved? If so, it seems that Vanco might be having some positive impact. I have heard of someone on this forum who have tried the same OV brand and dose for her son and it did work. I’d say Cutis Pharma seems to be working. Possibly using the same brand and increasing the dose might start working. Dr. Cox in his latest trial recommended increasing the dose if the 500mg 3x per day is not working, protocol below:

Alternatively, you can just contact Dr.Cox, he is willling to help. We have used his email address provided in the protocol (4 years ago) and he kindly guided us through the process.
Susan, please do not be disheartened, you fought this disease for too long now and you have done a great job. Best of luck, my heart is with you. Daniela
PS. I’m pretty sure others on this forum who have been using Vanco will answer and help you with advises .

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“2) For adults and children who weigh >30 kg, the vancomycin dose will be 500 mg given orally 3 times per day for the 1st month and continue with this dose if the clinical laboratory studies improve and are normal. If the laboratory studies are not normal the dose will be increased to 750 mg 3 times per day for the 2nd month and 1000 mg 3 times per day the 3rd month.”

Dear Daniela,
I will be in touch with my liver specialist this week. After I get the blood work results I had drawn today. Thank you so so much. And thank you so much as well, for your words of hope and encouragement.

If I remember correctly you were taking 10mL/3x per day and I questioned whether you were actually taking 1500mg/day. My son, who has never had any symptoms so he didn’t feel sick, started taking 20mL 3x/day. Vanco won’t necessarily work for everyone, but I have still had this feeling in my mind about your dosage versus my son’s. He is also taking Cutis Pharma (liquid) which he gets delivered to the house by a pharmacy in NY. The label says:
Vancomycin Hydrochloride Powder, FIRST Vancomycin 25mg/ml
“When compounded, each mL contains …equivalent to 25mg Vancomycin”

Thus, when compounded as directed, 10mL- 250mg.
The pharmacy label says "Take 500 mg (20mL) by mouth 3x/day.

Am I misremembering?

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You are remembering correctly!
I emailed my liver doc the next day and he responded by saying my dose was correct.
My bottle of Vancomycin Hydrochloride Powder for Oral Solution says “FIRST - Vancomycin 50 mg… When compounded each mL equivalent to 50 mg… Take 10 ML 500MG by mouth three times a day…”

I plan to email and call my doctor tomorrow to up the dose using Dr. Cox protocol.

I’m really bad with math. Am I not getting something?

My dr at UCLA would not put me on Vancomycin. He said UCLA doesn’t prescribe it for any adult patients with PSC. He said it has only helped young children and not always. I’m 54 and was just diagnosed. Any thoughts??

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We had a similar experience at UCSD. I’d recommend reaching out to the Stanford Liver Clinic. After your initial physical appointment, you can follow up with them electronically.

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Dear Holtz,
Search “Vancomycin” on this site. There is a lot written here which could help you understand this topic.

What stage are you?

Best of care,


SusanG - after 2+ months without normalization it wouldn’t hurt to start exploring variables such as brand (oral Ani) and dosage amount (increasing each month per Stanford protocol). Has your IBD improved at all?

jace0221 - 10mL and 20mL could both be 500mg of vancomycin depending on how much liquid was mixed in by the pharmacist. I would take anywhere from 3mL - 10mL for each dose depending on which pharmacist mixed that month’s supply. The important thing is to follow what they put on the label (eg. 1 dose = 5mL = 500mg vanco).

Holtz - You may need to reach out to a doctor more receptive to the treatment. Here are some trials studying oral vancomycin for treatment of adults with PSC.
A long-term look at the patients in the above referenced trial -
Mass General


Thank you. They told me I’m still in the early stages.

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You’re so awesome.

Yes, my ulcerative colitis seems to have definitely improved. I will know for sure when I have a repeat colonoscopy (to monitor dysplasia found last fall), in two weeks.

Did they tell you which early stage?

They just said the PSC is in the early stages. I don’t have IBD.

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Docs are fine with my raising my dose to 750 mg 3x for a month (which I began a few days ago on my own), and then 1,000 if no improvement.

My question is should I do this, or change brands from CutisPharma to oral Ani?

My docs are completely in the dark about this. It is my decision. I am willing to pay 1,000. for a few months to see if Ani makes a difference.

But, you are correct, many people seem to respond well to CutisPharma.

Not sure what to do.

Wondering what you and/or others here think?

Susan, if you change 2 variables at a time (dosage and brand) you will not know which of the 2 variables contributed to the change. To me personally, it seems that if Cutis Pharma OV worked for your UC (and worked for others with PSC on this forum) possibly you will need a higher dose to see the effects on the PSC as well. I’d say that after trying a higher dose, if it still does not work you can switch to a different brand. Another way to approach this, could be to change the brand now to the one that JTB recommended, use the same starting dosage as before 3x500mg per day and see if the new brand is working better than the Cutis Pharma. I think though that the best way to start/manage the OV treatment is to get in contact with someone in Stanford. Would you be able to do that?

Thank you for these thoughts. I agree with you.

I wonder: Are the docs working on studies with Vancomycin really open and willing and happy to talk to people who are not their patients? Does anyone have any experience calling out of the blue who cannot get to their offices or be their patients?

Yes Susan. I was one of those people. I sent an email to Dr.Cox back on Dec 27 2013 asking for help with my daughter. Back then I wasn’t even aware of the existence of this forum, it just happened that I read some research papers and i contacted him on an email provided on the clinical trials web page. Dr. Cox kindly helped us along the way, without my daughter being part of his trial. We could not travel to Stanford in Palo Alto, but we plan to do that soon. Can you schedule an appointment with Dr.Cox’s team? In Ireland you can do that via your family doctor. Can you self refer in US? Alternatively you can send them an email and get it from there. I know there are people on this forum who were in contact with the Stanford team recently, they will advise you better. All the best.

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Also, Dr. Cox is willing to discuss and share the knowledge about his protocol and this disease with your local Dr. Our local Dr. got in contact with him a couple of times (through emails) and for example after one year of Vanco they decided to reduce the dose for my daughter. And it worked quite well.

I will email him.
Thank you.
I live in the northeast and am too sick to travel to see these doctors in person.