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Reply to "Vancomycin for Pouchitis and new PSC diagnosis"

I have UC and PSC (I haven't had any surgeries for my UC though). I've been on vancomycin for my PSC since January 2018. Honestly, it's the heathiest I've ever felt. There are a good amount of PSC patients who take vancomycin off-label and seem to do very well on the medication.

It might be worth chatting about with your doctor if you wanted to try taking vanco long-term. After all, it has been shown to stop or slow the progression of PSC.

If you do try vanco long-term, just be aware that brand and dose are extremely significant. Certain brands seem to be effective within the PSC community (ANI, Lupin, Firvanq) while others usually don't have any benefits (Akorn and Alvogen). Dose is pretty patient-specific, so it might require some trial and error to find the right dose for you. I take 500mg 3x/day.

On my website I created a PSC Hub where you can find a ton of info about vanco for PSC, including the scientific theories about why it might help stop PSC; tips to get a prescription from your doctor; research papers and explanatory videos; patient success stories; and much more.

If you'd like more info or have any questions, don't hesitate to email me! Vanco for PSC is something I'm very passionate about and I'm happy to help out in any way I can. Wishing you the best of luck.

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