Thank you so. I’m studying the chart.
Hmmm, my son is taking liquid Vanco (1500 mg/day) and the pharmacy said 20 mL=500mg, so he takes 60 mL/day total. Your dosage is half.
By the way, my son started taking Vanco 10/8 and waited until Nov 22 for his 1st blood test (which had all his levels significantly lower). Next blood test will be mid-Feb.
Susan, have that 10mg dosage verified.
Jace,
That’s bizarre!!
Thanks so much.
I just sent an email off to my doctors.
Susan
Susan,
Did you get any answer back on the dosage?
Yes. It was correct. My hep responded immediately to my email, that next morning. It matters the concentration.
Thanks so.
Friends… I am going into my second month of CutisPharma liquid Vancomycin. I take it three times a day eight hours apart. So far I feel no change in how I am feeling except for it immediately (with two days), changing my stools for the positive. My question today… I’m sort of pretty miserable having to set my alarm to 4:30 a.m. every night. I deal with insomnia anyway and it’s not easy to fall back to sleep. On days I have a lot happening in my life it would be lovely to not have to awaken in the middle of the night. Do any of you know if VO MUST be taken every eight hours or is every twelve hours also how it can be prescribed? I recall a thread on this topic on this page somewhere but I’ve no idea where and what the consensus was? I’m just wondering if I might take it every 12 hours a couple days a week. Thanks so so so much for sharing your knowledge with me and us all.
Don’t stress too much about taking it on the dot. I’ve never woken up early to take another dose. I take it roughly 9am, 2pm, 7pm, and 12am. Real life often gets in the way and pushes doses back, but it hasn’t been a big deal as far as efficacy is concerned.
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That’s pretty regular 
Four times a day?
Wonder why my doc prescribed 3 x?!
I’m not using yet, but I would certainly have good sleep prioritized and simply adapt the schedules accordingly…hard to believe 2 hr difference would matter anything. Have your normal 8-10hr sleep and plan the timing from there…
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I’ve swapped back and forth from tid (3x) to qid (4x) depending on my current daily dosage. I’m currently taking 500mg/day and have 125mg pills, so qid (4x) it is. I think 3x or 4x is recommended for its on label uses. 2x is more of an IV dosing schedule but many PSCers take is this way without issue.
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Hi Susan. When my daughter was on OV IV prepared solution, 500mg three times per day, her schedule was: 8am, 3pm, 10.30p (or 11pm). Now, when she is down to 500mg twice per day, her schedule is 8am, 9pm.
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Thank you all so so much.
Can I ask what dr. In NY is willing to prescribe Vancomycin? I’ve been looking and looking. Thanks!
Joki, I’m not familiar with NY docs. My doctor is at University of Mass Memorial, in Worcester, Massachusetts. Let me know if you want his name.
Question dear ones, sister’s and brother’s with PSC who have experience with or know about Vancomycin. I have been taking Cutis Pharma 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 – 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. Deepest gratitude.
Hi Susan,
We’ve been using Generic Vancomycin HCL from CVS (w/ a $15 co-pay). Working directly with the team at Stanford that is working on the protocol.
It has been about 8 weeks since my partner started, and she hasn’t seen significant changes. She has had 3 blood tests, and the numbers seem to fluctuate. We were optimistic that her Bilirubin dropped to 1.2 at one point, it is back at 2.1 now. Her ALP shot up to 1300 before going down to 700 and is now at 990, AST and ALT are marginally lower than they’ve historically been.
The team at Stanford (Dr. Goehl) tells us they will monitor it for a few months before deciding if it is working. We recently raised the question of generic equivalence to see if a more expensive brand will be more effective, they haven’t gotten back to us.
I would recommend reaching out to them, we travelled once to Palo Alto and have been following up via Email since then.
Some misc info:
They have updated their clinical trials page on Vanco here: https://clinicaltrials.gov/ct2/show/NCT01802073, it seems like they are expecting results in June 2018.
The doctors also mentioned another clinical trial that is starting soon for a completely different drug, they didn’t tell me the name but I have a hunch it’s this: https://clinicaltrials.gov/ct2/show/NCT02780752?cond=Primary+Sclerosing+Cholangitis&rank=9
They said they were very optimistic about it and wanted my partner to participate.
Best of luck!
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Thank you so much!
Can you share the generic company making the Vancomycin your girlfriend has been taking?
I’m sure you’ve read all the comments here in various posts about all the various forms and companies making VO not being made equally?
When I googled hymecromone (as you referred to in your second link above), the following interesting article came up, from 2001, you and she might want to read it, It’s was a whole lot larger than the tiny participant study soon to begin for this drug and PSC:
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Where can I find the manufacturer information?
On the page for the exact capsule, it lists Alvogen Inc.
https://www.cvs.com/drug/vancomycin/oral-capsule
Yes, that would likely then be it.
Maybe now you could ask people on this forum for their experience and thoughts about this particular generic capsule form of Vancomycin?
Some people don’t respond as well to the generic pills compared to the original formula (now offered by Ani pharma as a generic). I started treatment by taking Alvogen and it worked okay, cutting my LFTs in half and getting rid of most symptoms. I later switched to a known good brand of vancomycin and my LFTs normalized within a week where they have stayed for the last ~5 years.
I’m surprised because I received this tip about generic vancomycin therapeutic equivalence issues from, among other sources, Stanford. Dr. Cox took note of this while treating his patients. Is Dr. Goehl aware of this issue?
There is a chance your partner could see significant changes by switching to a known good brand of vancomycin. In pill form, this is limited to Ani. Many pharmacies can special order a specific brand - this is what I did through CVS.