21 yrs, new PSC diag, 2 other rare AI disease and IgG4 levels

General
1

Greetings,

First quest: What is best place in USA for PSC when you have other autoimmune diseases (and we aren't yet sure if she has UC, etc. yet; waiting on colonoscopy), but she does have PSC and a connective tissue Ai disease and a vascultis type AI disease, along with Hashimoto's thyroid.

I'm writing on behalf of my college student daught, just diagnosed in ER (via MRCG )with PSC with narrowing of central bile duct, irregular beaded appearance, and stenosis in a couple of areas. Liver numbers were still within normal range; went to ER bec of severe abdom. pain and due to having 2 other AI rare diseases. She also has had raised IgG4 levels, and there is a new area of systemic IgG4 disease, and I know suspicions of a subset of PSC caused by IgG4 disease.

Thoughts on Mayo, UC San Francisco, Massachusetts Generals IgG4 clinic? Any insight and hep appreciated. We need to stop damage and figure out causation and best treatment for her if possible.

2

Colleen,

Sorry your daughter has a few crosses to bear. With psc, trying to figure out what caused it will be an exercise in futility, since it is an auto-immune disease. Why our immune system decided that it did not like our liver is unknown.

The best medicine can do is to treat the symptoms. There are some meds that some patients swear by that may help with her symptoms, but long term prevention remains to be seen.

If you use the search mechanism on this board, you could probably find some comments on UCSF and Mass General. Hopefully you will find some people with first-hand experiences with both place.

Jeff