Indeed they are. Before I started vancomycin, I used have 3 times higher LFT:s.
Thank you very much Mark! 
1 Like
Andreas,
This is absolutely fabulous.
Can you share what stage you were (are) in with your PSC and how long since your diagnosis?
Thanks so,
Susan
Thank you Susan! 
I got diagnosed in January, and I’m probably in the early stages (I havn’t done a Fibroscan yet).
1 Like
Thanks much for responding, Andreas. Best of care, Susan.
1 Like
Yes, well done! So what happens now, do you stay on Vancomycin or come off it? I’m curious to know how long Vancomycin should be prescribed for.
Hello! Vancomycin isn’t a cure, it’s a treatment. If you stop taking it, the disease will continue to progress. Therefore, you need to take it for the rest of your life.
Ok, thanks.
For those who try vancomycin, what are your expectations of this drug? Reduction of lft numbers? Reduction if scarring? Reduction of fatigue, itching, nausea? Increased bile flow? Just trying to get a handle on what it’s good for. I have small duct psc and don’t have any major symptoms apart from fatigue which has become a problem for me.
rick: You may want to take a look at the Stanford Vanco clinical trial phase 3 thread. Basically, some patients (4 out of 8 who completed and had the tests) had “Abnormal Magnetic Resonance Cholangiopancreatography (MRCP) Imaging at Baseline and With Clinically Significant Improvement at Year 1”. Most had LFT improvements as well.
1 Like
Hello Rick! The expectations/hopes when taking vancomycin are pretty simple, to stop the progression of PSC. Vancomycin might help against the symptoms, but that’s just an added bonus.
My expectations are that it stop the disease progression; reverse scarring; cause me to feel less ill 24/7; and even miraculously heal my liver. After almost a year on Vancomycin I can’t yet say if any of these things are happening. But having had PSC for almost thirty years the liver doctors agree it could take much longer than the three months all the studies are using as their cut off.
My symptoms of UC are so much better. This facilitates hope.
1 Like
Hi Andreas! How are you doing now? Wondering who you doctor is. I’m in Phoenix!
Hello! I am doing better than ever. All my LFTs are now normal (they were about 3x higher than the upper normal limit before). My f-calprotectine level is also normal for the first time in my life. I can now start the morning with a double espresso on an empty stomach, without feeling anything.
I met Dr Balan once. He’s an amazing doctor, and so is the other professors at Mayo. In fact, I always recommend fellow patients with rare and very serious diseases to meet professors.
1 Like
Hello everyone! It’s been a while since I logged into this forum. I’ve now had my PSC-diagnosis for 1 year and have been taking vanco for 7 months. All my LFT:s and my f-calprotectine are still completely normal. From time to time I realize that I’ve almost forgot that I have PSC and IBD haha!
If any of you guys reading this are intrested about vanco, don’t be afraid to reach out to me.
1 Like
Wow, Andreas, this is an amazing story. I’m new here and awaiting diagnosis. I’m wondering how much you pay for your vanco and is there a specific brand you use? I have researched online sites that sell it and ship it, but I can’t be sure if they are legit. I’m not quite at the point of using choosing a treatment option but it’s good to be prepared.
I love your story man! All the best!
Hello William! I use Firvanq (which is an oral compound) and it costs about $450 per month for 1000 mg/day in the US. I wouldn’t recommend buying it from some website, since this is a prescription drug.
Hi everyone! For any newcomers interested in my story, I just wanted to tell that I’m still going strong and my LFT:s are still completely normal. 
2 Likes
I’m taking ANI brand and began chewing it because I read somewhere here that seems to be more effective and it’s hard for me to swallow pills. Does anyone have any information about chewing verses swallowing?
My colonoscopy of two weeks ago showed half my colon had entirely healed. The other half still has severe active ulcerative colitis. My local doctor and I can’t understand why it was the further area from my small intestine – furthest from drug concentration – that healed. Anyone have an experience with Vancomycin healing UC and how this happened for you?
Unfortunately, my liver enzymes and GGTP continue to be quite high. Dr. Lindor still suggests I stay with my 500 mg 3x a day dose and although the Mayo study of (much) lower vancomycin doses being more successful confuses me.
Thanks friends, don’t know what we would do without this site.
Hi Susan!
Chewing ANI brand vanco is not more effective and is not recommended. The whole ordeal with chewing vanco has to do with generic vanco pills (such as those from Akorn) have issues with their absorbtion. The ANI vanco is the brand name drug/the original drug.
Yes, vanco has led to improved UC for some people.
When it comes to dosage, keep in mind that most people who take vanco have early stage PSC and that vanco generally has shown to work best for these people. 500 mg 3 times per day is probably the most common dose. 
Oh God. I wonder if my chewing it these past two months has not allowed it to work as it should? Such a bummer. Thanks much. Begun swallowing as of the moment I saw this note on my phone yesterday. And thanks also for commenting on my dose.
In great gratitude.