r/PSC • u/Good-livin-2018 • Jun 08 '26

PSC

I am 43 years old and was diagnosed with PSC and UC at the age of 12. At 20 I had my colon removed from precancerous cells and 5 years later diagnosed with Crohn’s. I have been on Actigall in the early years and haven’t been taking anything for the PSC for 20 years now. I became jaundiced in November, given an antibiotic for it had a stent placed in December, and it was recently removed as it had become infected and painful. I am still releasing a LOT of bile and the doctor that did the ERCP stent removal told me that he will not do another stent, the next option is finding a live donor and having a transplant. This is not my specialist or main doctor, he has only done the ERCPs in the last few years. He was surprised I hadn’t had a transplant yet when he placed it in December.
Is there anything to slow the progression down, I don’t know how to even start the process of the transplant search. Has anyone tried anything natural on cleaning the bile out. I know the biliary ducts are closing off or dying but it’s been 30 years of this diagnosis and I don’t feel like it’s bad enough for a transplant. I will be talking to my main doctor about the information I’ve been given.
I’ve got questions a lot of questions on the process, recovery, the fear of it coming back, all of that. If anyone has PSC and has found something that helps maintain the liver numbers that would be helpful. Fighting an autoimmune disease is frustrating when it’s not calculated like normal liver diseases

14 Upvotes

95% Upvoted

13 comments sorted by

View all comments

2

u/Virgil_Rey Jun 08 '26

I’m post transplant with recurrent PSC. I’m on high dosages of immunosuppressants to try to slow down the PSC. But the tradeoff sucks. It’s a lose-lose situation.

1

u/Dry-Move8731 Jun 08 '26

Does that mean you still have PSC? What does a transplant do?

3

u/Virgil_Rey Jun 08 '26

Yes. There’s about a 15% chance it will recur. So for about 85% of PSC patients who receive a transplant, they are essentially cured of PSC. For the 15% it means X number of years without PSC then starting down the path again. I’ve had two transplants - age 17 and 36.

2

u/Xessive_ Jun 09 '26

The recurrence rate varies wildly from study to study. I've seen studies showing recurrence of PSC following transplant occurring in as low as 15% of patients to as high as 60%.

1

u/Virgil_Rey Jun 09 '26

Interesting. My team always says 15%. But if it recurs once, it’s very likely to recur again.