My son (age 30) was diagnosed in 2016. We started Vanco in 2017 and had immediate positive results. After getting the 1st Covid booster in 2021 his liver enzymes shot back up and have been high ever since. We have also, as a result of insurance issues, had to change doctors. Our current heptologist is very good, but does not believe in Vanco effectiveness. He agreed to continue writing the prescription. The insurance refused, this year, to cover the Vanco based on the diagnosis. With the long term elevated bloodwork, we have asked the doctor to allow us to increase the Vanco dosage from 1500 mg/day to 2000 mg. This he refuses to do. My son’s gastro does not accept Vanco as a treatment for PSC or Crohn’s (which my son also has). So, the heptologist suggested we have the gastro prescribe the Vanco for Crohn’s. Does anyone know of a gastro in Northern NJ who is amenable to prescribing Vanco?
I don’t know of a gastro in Northern NJ but Dr. Aline Charabaty prescribed Vanco for my son. She is now at University of Baltimore Hospital in Maryland. I don’t have her contact information since we saw here when she was at Johns Hopkins.
Also, we use Mark Cuban Cost Plus Drugs since insurance won’t cover the off label use. It is very reasonable and they use Ani Pharmaceutical Generic to fill the prescription which is excellent.
Honestly im not sure how vancomycin would help with either PSC or Crohn’s, I myself have had colitis since 2016 and got PSC in 2022 I was taking vancomycin only due to a virus which is part of the cause of my colitis, vancomycin is an antibiotic which then fights off bacteria or viruses that aren’t supposed to be there which out of antibiotic vancomycin is one of the strongest which is why it’s important not to consistently take it otherwise he can grow a resistance to vancomycin which is not a good thing, things that can help with crohn’s if treatment isn’t working then prednisone could be an intermittent help with treatments lasting no more then 3 months at a time, along with PSC is caused by scarring of the common bile duct which means that once it happens it happens the scarring is the inflammation with no current treatment or cure
I invite you to do more research on it. Vanco is currently being trialed in a number of countries, as well as at the Mayo Clinic. Stanford University has used Vanco has a treatment for both UC/Crohn’s and PSC. The FDA has approved Vanco for treatment of UC and Crohn’s.
After my son was diagnosed, his heptologist (at my urging) started him on oral Vanco. Within 3 weeks all his blood work normalized. Subsequent MRI’s showed no progression and some improvement. Additionally, my son was diagnosed with Crohn’s at the same time. His next colonoscopy (1 year after starting Vanco) showed vast improvement. His latest colonoscopy (done by a different Gastro) showed no evidence of Crohn’s. My son never had any symptoms of Crohn’s or PSC and has never taken any of the UC medications. The only thing he has taken since his 2016 diagnosis is Vanco.
And, since Vanco is taken orally, it only is in the gut. It does not go into the bloodstream. There has been no documentation or studies that have shown any resistance when used this way.
There are plenty of references here on the site, and plenty of people here who have had remarkable results with Vanco. No, its not a cure. If it works for you and you stop taking it, the inflammation will return and progression with begin. However, if it does work, the progression will be dramatically slowed or stopped. I urge you, since you were recently diagnosed, to check this out thoroughly. You will be surprised.
If any of you want information on oral vancomycin therapy, I am happy to send it to you. Private message me. @CAID_17 You might find this infromation quite useful. @Jace0221 let me know if you still need help. I can try working with your son’s current physician (we have a peer-reviewed manuscript that will soon be published that will help). If he still refuses, I do know of alternative physicians.
My son’s current heptologist is with University Hospital in Newark, NJ. They are only willing to maintain the current Vanco dosage. I am trying to get the dosage moved up from 1500mg to 2000mg. They will not do it until/unless the medication receives FDA approval. His current gastro will not recognize any Vanco use for Crohns. I am trying to find a NJ gastro that is willing to write the prescription. My son has been on Vanco since 2017 and it was working great for both Crohn’s and PSC, but ever since he got the 1st Covid booster, his LFT’s have been high. At this point I want to find a doctor who will prescribe a higher Vanco dosage.
Hi. Why don’t you email me cynthia.buness@gmail.com or text me: 602-758-7525
Kindest regards,
Cynthia
Cynthia W. Buness, JD, MBA
Patient and Research Advocate for Primary Sclerosing Cholangitis
Global Liver Institute Pediatric and Rare Liver Diseases Council, Chair of Research Working Group
Stanford University, Autoimmune Liver Disease Network for Kids (A-LiNK), Parent Leader
Children’s PSC Foundation, Advisor
602-758-7525
https://www.linkedin.com/in/cynthia-buness-jd-mba-29775936/
ORCID ID: https://orcid.org/0000-0001-8309-6914