Post Liver TX patients who have acquired the PSC disease after the transplant

I previously had the psc disease for about 14 years and in 2010 I was fortunate to have a liver transplant. Unfortunately I have recently acquired the psc disease again with alot of generalized itching...Is there anyone out there who has had a similar experience and what meds were prescribed for the itching along with slowing the progession of the disease. UCSF increased my prograf as of yesterday and basically just have to wait and see what transpires. Appreciate any feedback on this...

Hi Catherine, I’m also in similar situation although it’s my second transplant affected by psc, all in 7 years. I’m in the hospital right now waiting what will new blood test and magnet resonance show up. I did present the doctors those vancomicyn study and they might try to put me on it for some short period of time, just waiting to get firt dose. The big problem is that the last solution is another transplantation for what I don’t agree yet.
Hope you might find solution with your docs soon. Write some news when is the chance, take care.

How are you Catherine? Please take a look at this article here -
Did you perhaps ask your doctors about vancomycin treatment? Mine were not excited but did agree at the end so I’m taking it in liquid form since last Thursday. Please write some feedback or have you been offered new transplantation as ultimate solution? Take care

Thank you so much for taking the time and giving me that information. My situation is a little different as my liver labs look okay, except the alka phos are a little elevated but because I have been on such a low dose of anti rejection meds the itching for psc has returned . The np at UCSF suscpects that it may be psc so she is increasing prograf in baby steps and will take it from there...In the meantime it has gotten a little better but still battle the itching daily...Thanks to you, I am going to mention Vancomycin to them as a possible addtion to my meds in hopefully preventing further progression of the disease...I have been on very low doses of prograf due to it becoming toxic in my system frequently but was only on 1 1/2mg's prograf and 5 mg's of pred...Also last summer I came down with ulcerated colitis and was having trouble keeping it under control and feel it may have leached over to the bile ducts..Did you get the ulcerated colitis before PSC returned...just trying to figure out what all is going on... Again thank you so much for sharing your experience...I hope the medication helps in reversing the psc condition instead of having to go thru another transplant...Please keep me posted as to your progress....Best to you

here is my understanding of PSC. it is an autoimmune disease that manifests itself in the liver. the recurrence after transplant shows that it is not a faulty liver problem, it is a faulty immune system problem.

i suggest you research foods that give people autoimmune reactions