This is my first time starting a topic! My son is now 15, diagnosed two years ago with PSC and UC. We are in a country that does not usually use Vanco for PSC due to concerns around developing antibiotic resistance.
My son has mostly been well since diagnosis (going to school, playing sport etc) but has continued to have raised liver enzymes and increasing damage visible on yearly liver MRI.
He has just started a 2 month trial of Vanco. Results after 5 weeks are GGT 130 (was 591) and ALT 63 (was 135). Also Inflammatory markers now in normal range.
We are not able to continue with Vanco unless our specialists are able to convince the State’s Infectious Diseases Committee and antibiotic resistance is unlikely. Obviously many people on this site use Vanco long term. I would love any information you have about antibiotic resistance (preferably links to journal articles but also any other information) that I could forward to our doctors to help with our application.
Many thanks for your help.
Hi, if you live in Europe try to check this side: https://ecdc.europa.eu/en/about-us/partnerships-and-networks/disease-and-laboratory-networks/ears-net
Article about vancomycin resistance: Review on Usage of Vancomycin in Livestock and Humans: Maintaining Its Efficacy, Prevention of Resistance and Alternative Therapy (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606620/)
From the Iran study: “During the three months of the study there were no adverse effects related to drug administration including fever, chills, rash, fatigue, gastroenterological symptoms (abdominal pain, persistent diarrhea), nephrotoxicity, neutropenia, ototoxicity, thrombocytopenia, antibiotic-resistant infections and neurological symptoms.” n = 29. See http://www.jgld.ro/wp/y2016/n4/a7.pdf.
Long-term use of oral vanco is pretty novel. Dr. Cox has the most experience here with ~60 patients on the treatment long term. He spoke last year on this point and stated that to date there have been no bacterial resistance issues. See https://cchmcstream.cchmc.org/MediasiteEX/Play/163d881253c347be89c22bd8f3798ff71d around the 49:45 minute mark.
Whether we are talking about potential unknown resistance issues from long-term use or known resistance issues, there have been zero cases reported thus far in all of the studies. Known resistance issues, typically involving VRE infection, are by their nature location specific and aren’t typically seen outside of a hospital setting. Notably, this treatment often does a good job keeping us out of the wings of the hospital where we would be susceptible to these infections.
Thanks so much for the replies. I really appreciate it. I will forward the information to my sons specialists. Fingers crossed he will get permission to continue on Vanco for a longer trial.