Does anyone have insight into a physicians in the NYC area that have strong experience managing PSC and not just transplants? It seems like both Presbyterian and Mt. Sinai have world class liver transplant teams, but I’m having difficulty determining the best location for care much earlier on in the disease process. I’m newly diagnosed with PSC following a re-read of by liver biopsy (MRI and initial read of the biopsy were negative) and asymptomatic at this time. I’m scheduled to see a physician at Mt. Sinai next week, but it’s difficult to determine if that’s my best path at this stage of the disease. Thanks so much for any guidance.
One aspect to keep in mind is preparing for the future in case transplant is needed (good to be associated with that group early on).
Another consideration at least for me would be if the docs are supportive of Oral Vancomycin treatment in the early phase. Not every doctor is prescribing Vanco for psc.
Agree with Ted. Meet with the doc and listen to what he/she has to say. My story is somewhat similar to yours - diagnosed last year, no symptoms, normal liver enzymes and bili, no IBD, however my MRI findings are classic and progressing. I was disappointed when my own gastroenterologist wanted another opinion from someone at U Pennsylvania. The physician at Penn, Dr. Ethan Weinberg, is very involved with transplant patients but knows PSC inside and out and was flexible about meds, if I wanted to start Vanco or Urso. I’m not quite ready but it is a relief to know that I won’t feel like I’m at someone else’s mercy. The reason I had a GI specialist in the first place was due to a complicated cholecystectomy in 2017 with a massive amount of gallstones and abnormal anatomy of my biliary tract.
I believe you will find once meeting with the physician at Mt Sinai that they will have on their team a hepatologist that does have a very good understanding of PSC. I’d be surprised if they didn’t given the population of that area of the country. You really need to be associated with a team of doctors at a transplant center so that if/when you need a transplant you can easily transition into that aspect of care. I encourage you not to stay with your local GI for continuing care through your journey with PSC unless that doctor is working directly with a transplant center. It’s one thing to need routine GI care, but PSC is a whole different world. We are here for you through it all so don’t hesitate to post any questions you may have or things of concern along the way. Every patient is different but I believe you will find that this group will be a good source for you. Take care.
PSC 2011 / Transplant 2015
Thanks Ted. I appreciate the guidance. I’ll be interested to see his stance on vanco.
Thanks Anne. I was diagnosed with UC in early 2019 and that came as quite a surprise since I didn’t have a classic presentation. The dx of PSC after a number of negative tests really shocked me. I’m glad that my local GI wouldn’t rest until he understand the cause of my elevated LFTs and referred me to Sinai. I’m eager to see what the new MD says.
Thanks Mark. I appreciate the guidance, support, and experience from this group.
Brian, my son has a transplant specialist with experience handling PSC and very amenable to Vancomycin. He’s great. I will PM his contact info
Brian, The two docs in NY who I believe prescribe vancomycin for PSC are Dr. Brett Fortune, N.Y. Weill Cornell and Dr. Joseph Odin, Mount Sinai NY. Let me know if you want information on this treatment. If a patient is responsive, early treatment is best and has shown to reverse damage to the liver and colon.
Thanks Cactusgirl. I’m meeting with a physician at Mt. Sinai next week. It isn’t Dr. Odin, but I’ll get his thoughts on Vanco. I appreciate the recommendation and will pursue them based on my read of the new doc.
Let me know if you would like me to email you papers on this treatment so you can prepare yourself for the conversation with your doc. You need to be your own advocate.
That would be fantastic. Thanks!
HI Brian, my daughter has PSC and we saw both Odin and Fortune and i can NOT recommend Dr. Brett Fortune enough. At the time, 2 years ago, Dr. Odin was reluctant to prescribe oral vanco, although perhaps he has changed, but Dr. Fortune agreed and my 22 year old daughter’s numbers normalized and her liver went from end stage Fibrosis to completely normal. Oral vanco is a miracle when it works. Plus Dr. Fortune is just a pleasure to deal with. I can’t recommend him enough. He’s at Weill Cornell. Good luck!
Thank you for the recommendation Joki. I have my first appointment with Dr. Schiano at Mt. Sinai tomorrow. I have a hundred questions for him, one of which is to get his thoughts on Vanco.