I was diagnosed with recurrent PSC, 7 years after my liver transplant. I have been very interested in Dr. Cox’s successful treatment of PSC patients with oral vancomycin at Stanford (if you haven’t seen this yet, google it!). I would like more info from those of you who are taking Vancomycin. Please share how you are dealing with the cost of this expensive medication, if it has worked for you, etc. hopefully this is the cure we are all wishing for. thanks!
I have done this twice this year. First time I took 5ml twice per day for 1 week and the 2nd time 5ml twice per day for 1 week and 10ml twice per day for 1 week.
The challenge is that it has only been tested with children so the dosage was estimated for me based on body size.
The first time my levels dropped by 30% and the 2nd time all levels were within normal ranges except one level which was still outside the normal range so arguably it had an amazing impact. I haven't done it again since and have my first doc appointment in 3 months this week since I last took it to see what the levels are now.
Hi-
My son is taking vanco (500mg x3 each day) now for four months. He just had his MRCP yesterday where we'll see if it has had any effect. His blood work hovers around normal, but he's also taking pred and imuran, so don't know what is doing what. Our insurance covers the prescription, but I've heard you can get it less expensively from a compounding pharmacy. Dr. Cox told us that he's seen encouraging results in post-transplant patients in keeping recurrent pac away.
Good luck!