Your results with Vamcomycin

Hey, I just started Vancomycin this week to treat my PSC. I’m taking Vancomycin at 250mg 3 times per day. I was wondering what experiences you guys had with Vancomycin. If any of you have some good stories to share to give me some hope that would be much appreciated.

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I have taken vancomycin off and on for the past 3 years for Cdiff and colitis. It has been a life saver for me with those two things. I never knew it was used for PSC. I had a transplant in 2017 and the liver has been doing well after a hard first couple years. I have been battling colitis and cdiff that I think was a result from stomach infections after my surgery but I have a pretty healthy liver and am very blessed. Hope the vancomycin helps you and your PSC!

Drew,

There is scientific data (albeit small studies) out there supporting the successful use of Vancomycin. I’m glad you have a physician willing to try it. Research Dr. Kenneth Cox and you will see success stories.
How long have you had PSC?
Do you also have UC?
I am anxious to hear good news as you venture forward!
Vicki

Vanco has been a game changer for my 22 YO daughter who was transitioning to cirrhosis. Normalized all her levels in 5 weeks and, after 6 months, the fribroscan showed her liver healed completely. She takes 1000 mg a day. Good luck!!

VJC, I’ve had PSC for 4 years. I only have PSC and not UC. I believe that the Vancomycin will work for me.

Thank you Drew. I hope you have found positive outcomes with Vanco.

Does your daughter also have UC? Did she ever have elevated IgG4 levels?

Hi, yes she had elevated IgG4 and, although her liver was very damaged (transitioning to cirrhosis) her colonoscopy showed just the very beginning of UC. But vanco has truly been a lifesaver. Her liver is now normal as are most all of her blood levels (she still is borderline low vitamin D). She takes 1000 mg ANI brand oral vanco. Lmk if you have any other questions.

Thank you. My 18 year old son, who has mild liver damage and mild/mod UC, was preparing to start Vanco 1000mg per day when his liver specialist ordered the IgG4. Due to his high IgG4 (232) we just started a 2-4 week prednisone to bring the number down, then hopefully on to Vanco. Can you tell me your daughters numbers? IgG4, ALT, AST, ALP before starting Vanco? How long has she been on Vanco?

I couldn’t find her IgG4 since it must have been done at a hospital (before PSC diagnosis, they thought she had cancer because of a lump they found on her liver which turned out to be an enlarged lymph node due to PSC) but, all of her LFT’s, plus even her cancer markers and, most other PSC related numbers, were originally 10x higher than normal. SImply terrifying. But vanco brought everything to normal on her 5 week post vanco blood draw. It was INSANE!!! I know I’m not a doctor but, from my endless research over the years (she started this journey in september of 2017), I would think you should start vanco now despite anything else that’s going on. Oral vanco has no side effects, and it’s so mild that it’s not even detected on blood tests, and only acts on the gram positive bacteria. And to answer your last questions, she started oral vanco in February of 2018 when we finally found a doctor willing to prescribe.

Thank you so much!

Hi everybody! I take oral vanco 1000 mg per day since 2018. I have PCS and UC, I don’t know how vanco effects on my PCS, but it really helps my bowel, Besides vanco I didn’t take other meds for UC, and my stomach was great. But two months ago I stopped taking Vanco, and now my bowel is worse.
I want to get advice, can I restart taking Vanco now? What do you think? or it’s better to wait for some time yet for more long break because of resistance risks.

Do not stop taking Vanco. It does not enter the bloodstream so very little chance of developing resistance. If you start and stop vanco, at some point you may run the danger of it not working. go back on it and stay on it.

Hi there,

Please go back on Vanco. It worked wonders for my daughter (PSC+UC, almost 7yrs on Vanco, 1000 mg/day). Her liver presents no cirrhosis anymore, UC resolved, LFTs normalised. I have also read on this forum about people who would have stopped, then got worse, got back again; one had to increase the dose and for another person it stopped working…

Best wishes,
Daniela

Hi, does your doctor prescribe you Vanco or you take it by yourself ?

I haven’t taken vanko for 3 months. It’s bad if it doesn’t work for me again. What do you think, Does it make a difference if I try taking it again right now or in three months ? Did your daughter have any side effects from it ?

Doctor prescribes

Hi there,

I would go back on Vanco straight away, that is my personal view on this. My daughter and other people on this forum did not experience any side effects. Also, from papers and conference talks there is no real risk of VRE.
You can stop Vanco at anytime in the future if you choose so and the microbiota will go back to what it was before…

Best wishes
Daniela

I can add a little bit about what I know (or I think I know). There is a notion that - based on the experience of a few cases - resumption of Vanco after a long break has resulted in less effective ‘response’ . The words from Cox were ‘didn’t respond as well’ after being off for several years, I took a break from Vanco (to normalize gut, then just to see what would happen/experiment), and after 2 years learned of this and got concerned, resumed it, and LFT’s normalized. In my ‘concern’ phase I sent an email to Dr. Cox asking for more insight, he only added that those few patients who resumed and didn’t respond ‘as well’ may have been because of more advanced PSC. There is a lot of unknowns. My break from Vanco was supposed to be for a month, and the idea was to reset gut bacteria once a year - i.e normal gram positive bacteria would overwhealm any VRE’s and reset the mircobiome. The limited data said that one month is enough to do this. This has very little supporting data I could find - one herbal med site that I can’t find again, and advice of one pharmacist that I got the vanco from. Anyway on learning of the possible ‘need for naivity’, as they say, for vanco to work on PSC, I decided never to go off again, but have weaned down to 500 mg day and so far so good. So yea, I concur with others, get back on it.

Hi,
I’m new to the forum. I was recently diagnosed with PSC. I am wanting to try oral vanco but my current GI will not prescribe. I am more than willing to travel to get the prescription. I would very much appreciate any information or names of doctors that are open to this treatment. I live in the Cincinnati area. But like I said… I would travel for vanco. Sounds so weird XD