My daughter got diagnosed with PSC in Oct 2010 with GGT levels of 1500. But since taking vancomycin in June 2012, GGT is currently 140.
Has anyone else tried vancomycin? I highly encourage PSC patients to try it. It’s being researched by Dr Kenneth Cox of Stanford. You can google for the following keywords “PSC vancomycin”.
My 4 yr old daughter has been taking it now for 2 weeks. Waiting to get her bloods done. 500mg per day. Wait and see. How is your daughter going now?
My 7 yr old daughter has been taking for 1-1/2 months now. We flew to Stanford and got her in the cox study. She was in a flair from her uc for three weeks when she started taking it, within four days her bm’s got better and have been consistently since. After her first month post vanc labs were drawn, her lft’s have almost normalized. It’s only one month into this thing and very difficult to stay grounded, but it does appear the be working for now. She takes 500mg 3x/day and wow is that stuff expensive. For those of you with children taking it, what brand are you guys using? Dr Cox said he has seen some issues with some of the generics and to go brand name viropharma or the prasco generic.
We had her bloods done yesterday some have risen. not sure what to be looking for. The bloods come with min and max ranges and she is out with the ALT,ALP AST her GGT are lowering. Creatinine still below minimum. Lactate Dehy- within range but has risen. Doctors say her inflammatory markers has dropped. Will have to wait for the next bloods in 2 weeks for a better picture. Then maybe if no improvement will have to up the dose perhaps...she is on 500mg/day ATM and Solafolk granules and probiotics. Other than that she is eating better toileting(poo) 2 daily( no blood diarrhea) and gaining a little weight.
Hi. God bless your family and you. My daughter is on 500 x 3 doses too. She is 8 years old. She’s doing good. Has been on vancomycin since May 2012.
The brand of the vancomycin is Dhacocin from ascent pharmahealth.
Thanks BenY it does seem like the higher dose may be a fall back plan later. The brand of our Vanc is Sandoz. all the best in health.
The Stanford protocol is 500 mg 3x/day for one month. If no responce, 750mg 3xday for the next month, if no responce 1000mg 3xday. If no responce after that the child is removed from the study. The more the damage to liver, the less the responce is what they have seen. But they have still seen some improvement in some that have advanced cirrhosis.