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Hepatitis of Unknown Origin on top of PSC now


#1

My husband was hospitalized two days ago with jaundice, nausea with bilirubin 14. Soared to 18 yesterday. Previous to this he had only the standard liver infections, with stenting and antibiotics, piklines, etc. totally different symptoms, bilirubin always fine. Now they are trying to pinpoint hepatitis of an unknown origin. Has anyone ever experienced this?? They’ve run tons of tests for toxic exposure, bacterial or viral which have so far come negative. Doing biopsy this morning. Has anyone heard of PSC’s autoimmune driver switch to acting like hepatitis and affecting tissues?


#2

I have read on several forums that people can get both psc and auto immune hepatitis. What the link is, what the starter is/interaction between the two, I do not know.


#3

There are multiple types of hepatitis (not just viral hepatitis!). One form of hepatitis is autoimmune hepatitis. It is common to have both PSC and autoimmune hepatitis. If your doctor doesn’t know of this, I would strongly suggest seeing someone else since this is pretty basic knowledge.


#4

Thanks…common… Wow…they are doing a biopsy now to determine this. Dr. said that if positive, it is treated with a steroid. Is there a cure?


#5

You can’t cure autoimmune hepatitis, but you can keep it under control with steroids. This does however not stop the PSC progression.


#6

My son has both, diagnosed at the same time. It is treatable but not curable, after what I’ve understood. He gets treated with prednisolon for now.


#7

Thanks Annie. Are the meds given daily or prn? Annie have you tried an autoimmune diet? Reading about the work of Dr Sandra Cabot.


#8

I was thinking the same, AIH treat with steroid. I test for it every 6 months along with other LFT’s. I believe it is the Ig4 blood marker? It does seem very strange that your hepatologist was not aware of it.
My hep did say if my Ig4 levels were elevated, that is the only reason at this juncture she even consider a liver biopsy.

My cousin had both AIH and PSC.

Hope all goes smoothly!


#9

We have only had the diagnosis for 2 months, so we haven’t done a lot on our own dietwise. But we just eliminated gluten and reduced lactose. And I ferment drinks and vegetables for him. He’s only 12 and Daily medicine, prednisolon and Imurel.


#10

Thanks Annie. Where do you received medical care?


#11

Thanks MzzP. He is still in hospital because numbers coming down rather slowly with 60 mg of steroid. I don’t know if testing for the hepatitis fell through the cracks either they keep saying that this overlap is rare. …did your cousin have a transplant?


#12

Hi RoseSharron,

My cousin did have a transplant after 10 years. She was diagnosed with AIH first and there were discussions of PSC overlap due to other PSC symptoms. As you have found, not all hospitals and docs are on the same page with what is what and what to look for. She was diagnosed in the 90’s.
My personal feeling is that unknowingly, my cousins docs did not know much about PSC at the time, none of us really did. My hep considers AIH as a type 3 PSC when we also see stricturing of the bile ducts with elevated LFT’s - treated with steroids and the benefit is that it helps to slow the disease. Not cure or stop, just slow.

I seem to read about a lot of PSC patients with AIH overlap. There are two FB groups that also can offer a wealth of information and support also.

Here is a good write up on AIH and they even mentioned it can be missed. Please keep us posted on your hubby’s progress and sending you both a big hug as you work through this next window.


#13

We are in Norway and under the care of the only hospital in the country who does liver transplants.