My name is Dave Feldman, nominally the administrator of Living with PSC. I was introduced to Ben Munoz a few months ago by a friend who was familiar with his work and knew about my diagnosis.
In short, I’m a 29 year old, otherwise healthy Bostonian who was diagnosed late last year with Primary Sclerosing Cholangitis (PSC). Given the rarity of PSC, along with alot of the noise online about exactly what this diagnosis means, I thought this would be a great site to discuss treatment, symptom management, and the process of liver transplantation.
That said, I still know very little about PSC outside what my docs have told me and what’s online. Please feel free to contribute in the way that you see best.
To kick things off - medication. Like most with PSC, I also have UC. I’m currently taking:
Asacol - 2400mg/ day (for the UC)
Bactrim - 1 tablet/ day (for the prednisone)
Lansoprazole - 30mg/2x day (Ulcers related to the UC)
Imuran - 150mg/day (for the UC)
Prednisone - 15mg/day (for the PSC)
Cholestarymine - 12 mg/day (for itching related to the PSC)
Ursodial (for the PSC)
Honestly, the questran (cholestarymine) doesn’t seem to work. I also tried rifampin for the itching, but it made me really ill (headaches, tiredness). I manage the itching similar to dry skin but its always in the background. Would love to hear from other people about symptom management and what works best.
I can speak to the effectiveness of the cholestarymine. I take two packets/day. I think each packet is 4g of cholestyramine (9g total). I didn't do a lot for me either, then I saw a hepatologist that told me to take it separated by food by at least an hour on each side. So no food for an hour before you take it or after. I know it's a hassle to take those packets and trying to work it in a schedule where you don't eat for that amount of time, but if you do that regularly, I think you will notice some improvement in the itching.