Hello Everyone,
For those of you who are using vancomycin, could you please post the following?
Pediatric or adult patient?
Brand?
Daily dose?
How long have you been taking?
Your most recent ALP?
If you tried vanco and didn’t work:
How long did you try and what was your dose?
Thank you all so much.
Jim
My son is 14 yrs old. Recently diagnosed with PSC. Diagnosed with Chron’s 1 yr ago. He has been taking Vancomycin for 6 weeks so far.
Vancomycin 500 mg oral tabs three times/day
Ani pharmaceuticals
Test. Result (standard range)
4/28/20. 3/16/20 4/27/19
ALK PHOS 398 (<110-440). 488. 212
AST 42 (<36). 52. 99
ALT 41 (<60). 46. 183
GGT 11 (<98). 97. 224
Not sure what his Alkaline Phosphatase was at just prior to starting vancomycin. Seems like they didn’t test it. But it appears to be working and started working in 2 weeks.
Adult—age 21
Started January 2019
ANI Brand
2000 mg a day
ALP 68
My son is 17 and takes vancomycin 500 mg three times daily.
Ani brand
He has been taking the medication for at least a 18 mths.
He went from stage 3 liver disease to no stageable liver disease within 5 mths of taking the medication. Maybe sooner, but that is when we had the MRI. No side effects. His labs have been completely normal for over a year. He AST and ALT are actually on the low side of normal.
Here’s some about me! 
Adult
Firvanq and ANI (liquid vanco)
1000 mg
2 years
Normal LFT:s since 1 month after I started vanco
My daughter is 22
Diagnosed with stage 3 PSC and end stage fibrosis in oct 2017
She started 1000mg daily ANI vanco feb 2018
Her once 10x higher than normal labs were all completely normal at her first 5 week blood test
A fibroscan after 7 months showed all her liver damage had healed and is now completely normal
She continues on 1000mg a day and everything has been stable.
Adult
Ani pills (previously took an IV Kabi compound that worked well and Alvogen pills that didn’t work so well)
500mg/day (down from 1500mg/day initially)
Just about 7 years
Recent ALP was 48 (my record pre-vanco was 687)
Adult
currently Sandoz, also Hospira, Valeo, whichever is available
1000 mg (down from 1500) IV powder taken orally
2 years (1 year, 3 years off to see what would happen, then 1 yr ongoing)
ALP 55 (worst was 167), all LFTs normal
Teenager (diagnosed PSC+UC at 13yrs old, now 19yrs old)
Kabi IV (previously on Milan, Demo, Sandoz)
500mg, 2x per day
6 years
Current ALP 102 (normal for teenagers).
LFTs all normal
My 25 y/o son. Diagnosed in August 2016, started Vanco Oct 2017 (500 mg 3x/day Firvanq liquid).
Enzymes normalized March 2018. Normal since then. No symptoms and no side effects
Incredible!
Hi guys! I’m down to 500mg/day to try to preserve my stock of vanco (can’t travel to USA from Europe due to lockdown). Hopefully this dose will still work for me!
Keep us posted about your reduction to 500mg. Curious to see if your numbers stay down. Thanks!
Sure, I’ll do so! Would be good for my wallet if it works hehe! 
Btw, it would be really interesting if they in vanco research studies seperated patients in different stages of PSC. Maybe you’re fine with 500mg if you’re at for example stage 0-1 (no or very little fibrosis in the liver)?
Hi Andreas, I suspect the same hypothesis, my PSC or rPSC formally, is in my transplanted liver where - in the situation where I got LFT tests every month, I was able to isolate onset withing 3 months (unprecidented). At this point on 1000 mg and immediate positive response. will scale down to 500 mg in (Stanford protocol) time. skol!
My son 37, diagnosed with PSC around 18 years of age. On Vanco since June 2018, Firvanq 500 mg 3X/day. ALP 134.
Pediatric or adult patient? Began taking at age 15. I am now 23
Brand? ANI (a few times switched to AKORN and Alvogen, symptoms returned within 2 weeks) [Caveat–ANI changed manufacturing in early 2019 causing an absorption issue for me and others. So now I open the capsules prior to ingesting]
Daily dose? 2000mg (1000mg BID)
How long have you been taking? 8 years
Your most recent ALP? 51 And, all LFTs normal, colon normal, liver normal with no signs of disease
If you tried vanco and didn’t work:
How long did you try and what was your dose?
Hi Joki! I did a blood test today (2 months after reducing my dose to 500mg/day) and it was still completely normal. So it seemed to work for me at least! 
Btw, I went to Croatia for 2 weeks in order to be let into the US and avoid the border restrictions.
Disclaimer for anyone reading this:
I have been taking vanco >2 years and have a very early stage PSC. Therefor, my (low) dose might not work for your body.
I am 65 years old and was diagnosed with biliary disease in 1991. Last biopsy (a surgical wedge biopsy), about a decade ago indicated stage 3 PSC. Liver stiffness MRI (I’m forgetting the name of this newer MRI), a year ago indicated a lower stage.
I took ANI 500 mg 3x day for a few years. I switched to Firvanq in Jan 2020 because I was concerned about the quality of ANI and not thrilled to spend $6000., a year, on a no longer predictable manufacturing process as shared with me by doctors on top of this drug.
My GGTP remains high (180s) and my Alk Phos around 135ish.
I’m about to cut back to 250 3x day upon the suggestion of Dr. Lindor who I sometimes correspond with (I’m in western Mass and he’s out west), because I still do not feel well. I feel somewhat better than I did before beginning Vancomycin but still feel quite sick quite often. He said in their studies people did better on lower doses. I’d read these studies some years ago. It seems there are two schools of thought on dose. One showed lower doses worked far better, 250 3x day. And then there is the 1,000. mg 3x a day school.
Since I appear to have stabilized but am still significantly limited in my daily life, I’m willing to go lower for a few months to see if that makes any difference. Hopefully doing this won’t negatively effect raising my dose again need be.
I’ll keep people updated about how I feel on the lower dose.
Hi Andreas, thank you so much for letting me know! I can’t believe your trick to come into our country worked. Good for you. And congrats on the lower dosage!! I know how expensive those pills are so that’s wonderful!