I was diagnosed with PSC in 2011. I got worse rapidly. Every few months I would end up inpatient with pain and high fevers. A biopsy said I was at a 2.5-3 out of 4 (4 being worst.) My meld was just at the point where they started working me up for transplant.
During my screening, I expressed my desire to try the Vancomycin treatment because of what I read about it. My doctor was unfamiliar with it and reluctant to try. I found links to an ongoing clinical trial, and asked my doctor to call Dr. Cox who was running the trial. After pushing enough, he called. A week later, he told me that I was probably too far for the treatment to have any effect. I said I wanted to do it anyway. They stopped the transplant screening process and put me on Vanco. I have been on it over a year. My labs improved some, but not as much as most others…however, I have not ended up in the hospital once, and while I’m not 100% better, i have definitely improved.
I now take it 3x a day, and see my doc once every 6 months to do blood work and monitor. Other than that I’m leading a normal life once again… Just a little high on billirubin.
Insurance has tried to deny a few times…and my pharmacy had to have the doctor call them once or twice… But it was never a problem… Just a day delay or so. I don’t do the compound thing…I take oral pills 3x a day.
I have "early" PSC, probably have had it for 8 years....official dx was about 2 years ago. I have nl bili, my transaminases fluctuate but basically about 2-3x nl. I have UC but no symptoms. Liver bx clear PSC but relatively early. I have thought about whether the data is strong enough for all that it would entail to go on long term oral vanc....my GI voted no, but anyone have thoughts???
My logic when insisting to go on it was this : the current data suggests the earlier you start, the better your chances of it working. If it didn't work, what did I have to lose? It may not do much good...but it will more than likely not do any harm!
If you have symptoms then good idea to start it. I don’t have any symptoms so Stanford docs advised me not starting Vanco (because it would be impossible to know if it helps). I didn’t push it further. I’ll do blood tests every 3 months if things change (if they get worse or other symptoms, I’ll start Vanco asap).
so it has been a month and I have followed the studies, think I am starting to drink the Koolaid and seek out a GI that thinks oral vanc is a reasonable option. I was dx'ed about 2-3 years ago, prob have had disease for much longer though. I have nl bili and transaminases about 80-100, alk phos about 200. No dominant stricture so I am assuming the LFT elevation is due to small duct disease. I have UC but no symptoms.
My plan to start oral vanc at 500 mg TID, and see how my numbers go. I have no sx to follow, just the numbers. It was mentioned that this rx if it is to work should be started early. I tend to agree. This is a disease of fibrosis or scar. This is probably irreversible, the trick is to stop the fibrosis from forming in the first place.
