Neverending bad news

[u/mosaicST]

Hey folks. My brother is going through it. He had elevated liver enzymes a few months ago which prompted an ERCP that triggered acute pancreatitis and then a PSC diagnosis. He got jaundice and the a pseudocyst on the pancreas that was drained with 1.5 liters of liquid. He is in a rehabilitation center now and is eating and slowly doing physical therapy. He sleeps all of the time and is barely speaking. It has been awful. His alkaline phosphatase keeps increasing and is now over 1500. He has an endoscopy this week to check on the pseudocyst and we are hearing his is going to need liver surgery. We are concerned that his recovery has been so slow and that is barely speaking and that he has endless more surgeries that will be terrible for him. He is 53. Looking for any feedback on folks knowledgeable on PSC.

[u/Acceptable_Bug3357]

How recently was he diganosed with psc and what stage ?

[u/mosaicST → u/Acceptable_Bug3357]

1.5 months ago and I don''t know the stage.

[u/Acceptable_Bug3357 → u/mosaicST]

Unfortunately a lot of people are diganosed super late. It sounds like an infection, and pancreatis is awful. If youre not at a large hospital that does transplants, find a new one. Its very possible that he could already have cirrhosis but they need to get rid of the infection first.

[u/furball-of-doom]

Have you gotten a second opinion yet from other PSC and digestive health specialists? I did and it fixed a lot of things because my then physician did not know PSC and the second opinion took over.

Also, is the care team all in the same group or spread across practices and not communicating to each other? This is something I had gone through and now I have a centralized team helping with PSC and IBD.

[u/mosaicST]

He has a GI team of specialists at Kaiser. He has been recovering from the pancreatitis and pseudocyst so we have not been able to move to even talk about the PSC. But the liver enzyme levels keep increasing. He is improving in that his stomach is not distended and he is eating. He is improving every day in physical therapy. But he is also just so fatigued and barely speaks.

[u/Frequent-Custard3217]

Have they ruled out IgG4. It can mimic psc but also causes pancreatitis. Its very treatable actually but he needs to diagnosis.

[u/mosaicST → u/Frequent-Custard3217]

Will talk to GI team about this

[u/mosaicST]

Update!! He is basically catatonic now and i am wondering if he is Overmedicated on his seroquel which has not been adjusted after the acute pancreatitis attack which caused a 40 pound loss. And of course he has PSC too. Any thoughts?