Doctors prescribing Vancomycin for PSC in Europe

First of all, good on you for what your doing for your girlfriend, every PSC’er needs an advocate, someone in their corner – its how I survived in fact. I had PSC, transplant, rPSC, and now completely normal (no evidence of PSC) due – I strongly believe – to Vancomycin (reduced to 750 mg/day of the IV stuff taken orally). Along my journey I have accumulated some bits and bobs that might speed your research. First, a preceding point from Ted about reading the papers (about a dozen or so) and even reaching out to each author is a plan. Second, I mentioned inquiring to US based clinical trials. Remember that inquiring about participating is (in part) doing them a favor, but just from the inquiries you will gain the live-person-expert information your looking for (like your girlfriends concern on VRE). I just looked up this one and it actually has phone numbers (of study coordinators, not necessarily DRs, but still full of advise). https://www.mayo.edu/research/clinical-trials/cls-20436937. I know they take internationals, I also know (as a non-US citizen and international myself) I have corresponded directly with two big hitter PSC doctors in US by email and phone (very briefly but they actually will do that). Third, In talking with any Doctor on the subject, although all questions are good questions, remember that supporting or prescribing Vanco is off label and is a risk even to those in the big US research clinics who study it on PSC – so best the inquirer be fully researched and committed to getting Vanco come hell or high water. What I’m saying is its one thing for a Doctor to prescribe or recommend Vanco to someone who is committed, another place on that DRs risk spectrum to have to first talk you into it. Third, if you haven’t seen this already, take an hour and have a listen to the guru on this that JTB found and posted – VRE concern addresses by him in short answer during Q and A at about 49 minutes in (but the full hour is sure enlightening!). Stanford Vancomycin trial phase3 results available. Fifth, there is this group whose mandate seems to be to advocate for Vanco (given its biases against and orphan challenges). http://childrenspsc.org/resources. There are a few folks named there (Doctors and parents) who might be willing to point you in a direction. And I just noticed on that site there is this quote from a PSC Dr Q@A… A: Q: Have there been any cases of resistant bacteria due to the long-term use of vancomycin? “To date, nothing has been reported with oral vancomycin and VRE. VRE has been reported with IV vancomycin, but not in oral vancomycin. And we do check in with ViroPharma to whom everything gets reported. I know that becomes a big concern and a big scare for people. I’ve heard it in conferences when I’ve presented. However, since there hasn’t been a case of VRE with oral vancomycin yet, we believe the risks are probably small for developing VRE with this form of the drug. Can we guarantee that somebody won’t get VRE? Absolutely not, and we do put the risk of VRE in our consent forms. If we did start seeing cases of VRE with oral vancomycin, it would probably be a big deal in a larger sense because vancomycin is used to treat C. diff. I’m hoping to get more information from the studies that we’re doing on gut flora. I think the data coming out will guide us, and tell us more about what vancomycin is doing.” So, there y’ar, have at it. Good health isn’t always easy buts it worth it.