Vancomycin used to treat children with PSC

[Guest guest]

Hello Everyone,

A new member of our Sacrament PSC group, Traci has a six year old

daughter who was diagnosed with UC and PSC last year. She was referred

to Standford University where Dr. has been treating child

PSC patients with an antibiotic, Vancomycin, with great success for

about 10 years. Traci's daughter, after six months has no UC or PSC

symptoms; normal LFTs. Dr. is also willing to try oral Vancomycin

on adults. The following is an email from an adult member of our group

who has also tried Vancomycin and although it did not work for him, he

is recommends that others try it:

I heard about the Vancomycin treatment for children in 2006 and wanted to

try it. I called 's clinic, met Dr. Safta, she persuaded Dr. to let

me give it a try, I met Dr. and he agreed. I had the impression that I

was the first adult to try it, but there may be others. Dr. Anca Safta was

my main contact there.

Dr. is a pediatrician in private practice near Stanford University and

Hospital. He told me that he stumbled into this treatment. He had to treat

a PSC child for an intestinal infection and used Vancomycin, which is very

expensive but has the advantage of staying mostly in the gut (not entering

the bloodstream). The treatment not only cured the infection, it stopped

the PSC symptoms and signs. So he tried it on other children and it has

worked many, many times. Although the paper on this trial was published

over a decade ago, he told me that he continues to apply the treatment to

children and that he has many, many children now who are in complete

remission of their SC.

My case is unusual. I had a complete blockage of the bile duct outside the

liver (the common hepatic duct) with little stricturing inside the liver.

The Vanco loosened my stool and eventually I felt very fatigued so I stopped

taking it after 2 weeks. I later had a surgery to remove the extrahepatic

bile duct (and stricture) and am much better. Anca told me that they have

never had such a response to the Vancomycin in any other patient. I am

weird. The UCSF surgeon who removed my extrahepatic bile duct also told

me that I'm weird. The segment of bile duct was totally scar tissue. It

was not a stricture; it was a solid piece of scar tissue. He said that it

looked like an old, old, scar. So we are all not exactly sure what happened

in my case, but it is worth noting the unusualness of the case so that you

can take my response to Vanco in the proper context.

Vancomycin is expensive (something like $5,000 per month) so convincing the

insurer to pay is an issue. Dr. Safta got on the phone and convinced my

insurer to pay. I was quite surprised. It appears that Dr. Davies has this

aspect worked out too.

I cannot imagine not trying this therapy for a child with substantial symptoms

of PSC. I have yet to hear any reports from other adults who have tried oral

Vanco therapy.

(Sacramento dx PSC/UC 2001)