Another Vancomycin question

I’m about to go into my 7th month on Vancomycin. My blood work is the same as it’s been these past almost three decades since I was first diagnosed in 1991 but my stools are so much better I dread going back to what it was for much of my life. My doctor does not know what dose to write the prescription for. Do I stay on 500 tid or do I go up, or down? My doctor say’s the studies are not enough to guide us. It’s like tossing dice as we have discussed here before “the science of dosing [VO] has not been perfected”. Any thoughts as always deeply appreciated. Should I bite the bullet and ask to take a higher dose as Dr. Cox has done in his studies or should I be taking less as Dr. Lindor and others have used more successfully it appears? How much Vancomycin should we be taking??? Sorry to continue to ask the same questions but I cannot figure this out by myself.

IMO, I would first try increasing. You can always decrease if there are no changes.

My understanding, which perhaps is not correct, since in reality so little is known about VO and how it works for us, but I’ve read this in various forums, is Vancomycin doesn’t work at all when one goes down from higher to lower… But, I’m on the same page as you, Jace, as I wrote my doctor earlier and asked him to double my prescription much as Dr. Cox does when patients aren’t responsive. It’s a hard call since I’ve been responsive in a few ways and maybe I just need to be on it longer considering I’m 63 and have had this disease for thirty years.

Does anyone know when the Cox et al., paper on their results with Vancomycin is being published? June 2018 is almost drawing to a close and I know that was the date they were projecting.

Not sure, but hopefully soon :slight_smile:

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As far as we know right now, there’s no optimal dosage. Dr Lindor does indeed use lower dosages in his study (500 mg and 1000 mg per day) compared to Dr Cox (1500 mg per day), but both dosages in Dr Lindor’s study reduced ALP equally as much. There is no study that suggest that a certain dosage works better than another. Also, keep in mind that vancomycin is less effective for people with late-stage PSC.

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