Has anyone had any success using oral vancomycin when they had no UC findings? My son is about to try Vanco for PSC. His liver enzymes are very high but he just had his first colonoscopy and all looks normal. He is 22. Diagnosed in November.
I guess I should also introduce myself. I’ve been a member of the group for a few months but have remained in the shadows. My 22 y/o son began the PSC journey this past summer (at 21) where a physical revealed highly elevated liver functions…blood tests, MRCP, MRI, liver biopsy followed and diagnosis of PSC officially handed down in November. Not the best summer and fall. At the moment he does not seem to have any sign of crohns or colitis. Vanco starts today…
I don’t have UC so far, only PSC. I’ve had luck with Vanco & Levaquin. If I have repeated attacks of fever/chills & nausea it means I have a blocked duct that isn’t resolving on it’s own. Then the only thing I can have done is an ERCP w/stent placement.
Thanks for your response Merry. Did the Vanco help normalize your numbers on its own?
My numbers came down on their own the first time (liver enzymes were over 1,000). After that, when they went up antibiotics helped.
Somewhat similar story as my son was diagnosed in August 2016 with PSC, at the age of 21. At the time he had absolutely no symptoms besides elevated liver enzymes. In December 2016 he had a colonoscopy, which discovered Crohns, although he never really had typical symptoms.
We started Vanco in October 2017 and 1st round of bloodwork showed significant drop in enzyme levels. If Vanco is going to work for your son (and it doesn’t work for everyone), the absence of UC/Crohns won’t mean anything.
Thank you so much for this note…Really hoping for the best, could use a good result. Hope all is going well for your son.
I have PSC and no clinical IBD. I’ve been on oral vanco to treat PSC going on 5 years and it has been a life changer. Another user on here, rjm, also has no IBD and has had similar success with the treatment.
Brand can be pretty important. What brand of vancomycin is your son taking?
Vancocin. It’s the brand I can get in Canada and It was recommended by another mom who’s son is on it (She works with Dr. Cox) Here’s hoping!! Thanks so much for replying. Any information advice is greatly appreciated
This is good to hear. I was only just officially diagnosed last summer, and I will be pushing hard to get on Vanco, even if I have to drive 1,000 miles to find a Dr. that will prescribe it I am hoping that starting early will go a long way to combating this disease.
Once I get on it, I intend to document any results…positive or negative, on this forum on a regular basis.
Not sure if this has been asked before, but are those on Vanco also taking Urso, or just the Vanco?
Vancocin is the first and the best. My only other suggestion is to play with dosage amount if your son’s numbers don’t normalize after a few months. Some people need a lot of vanco to normalize.
Steve - the vanco+urso question actually popped up a few weeks ago: Ursodiol for those taking vancomycin?. I currently take vanco only.
Another question for those who started Vanco 500mg/3xday…and stomach upset or gas in the beginning. My son is having some…hopefully his body gets used to it. Not severe. This is day 4 so very new. Comments welcome.
That’s a pretty common side effect for a lot of antibiotics when the gut microbiome gets turned upside down. Hopefully, it is just a short term thing. Something that may help is to take it with food.