Hello! I’ve been reading posts for over a year, and am very grateful for all the information shared here. My PSC experience was intense at first, and after that much easier to manage.
I had been timid about posting, because my case seems much less severe than many of the people here. My hepatologist said recently he suspects it might be a secondary rather than primary condition. At first I rejoiced because as he explained it, SSC is not progressive the way PSC is, and a possible future transplant seemed out of the picture. I started taking ursodiol, after being wary of it initially, and my lab numbers went down. Last week I had my first cholangitis attack in 6 months - disappointing! - and have decided to post. My doc now says that a diagnosis of SSC instead of PSC might not make much difference in how the disease impacts me, and that it may not be easy to truly know.
I’d like to know how others have encountered an SSC diagnosis, and if their experiences are different from those of PSC.
My history: I have never been jaundiced, and itching has not been much of a problem. An ERCP for stone removal in May of 2017 lead to PSC diagnosis. Less than 2 days after subsequent gallbladder removal I was back in the hospital with severe cholangitis that lead to sepsis. High fevers landed me back in the hospital twice after that - I was admitted 3 times between June and August 2017.
A few attacks of various severity followed, but I now have antibiotics on hand if the fever climbs over 102.5 (it happens so fast!) and I know how to stagger doses of tylenol and ibuprofen to lower the fever as quickly as possible.
Thanks for listening to my story, and all the best to those of you who are battling this strange diagnosis daily!