This is an invitation to participate in a Vancomycin for PSC survey. This is cross-posted to other PSC forums.
Hello Friends,
I am RJM and I have been a member of this and several of the other PSC pages for the last decade. I had a live organ transplant in 2012 and was diagnosed with Recurrent PSC in 2014. I post replies from time to time, for the most part I offer my growing expertise with Vancomycin as a treatment for this condition. This off-label treatment has been effective for me and that is consistent with the growing body of literature and reports on these forums that have indicated it is helping others. Recently I was pleased to have been asked to help with a survey study on Vancomycin treatment for PSC; an initiative of my transplant care team at Vancouver General Hospital and University of British Columbia. There is a wealth of experience on this subject from the social media PSC groups that are thousands strong. A formal scientific survey of collective experience with Vancomycin on PSC, providing a consolidation of information for publication, will be very valuable for our community. If you or your dependent have PSC or rPSC, and have taken Vancomycin, please take 10 minutes to take the survey. There is an opportunity at the final question to elaborate on your personal experience with Vanco. Please take some extra time there to ensure that your personal experience and wisdom can be collected to help others - tell them what you’ve learned. Let’s help these researchers help us. My appreciation to UBC and VGH - on all of our behalf - for the initiative and the opportunity.
Please click or cut and paste this link to take the survey…