Re:Best practise for PSC management?

[Guest guest]

Ivor, thanks for posting this. I have questions about a couple of things.

to add:

MRCP: it is non-invasive, so is free of the complications ERCP can bring. It is

getting

better at detecting bile duct strictures and cholangiocarcinoma. For

maintenance, it seems

like periodic MRCP would be less risky than ERCP, which can always be performed

later to

dilate any strictures. MRI is still expensive in the US, but ERCP seems like it

would be even

more so. I got a bill for an MRCP a few years back- $3000, but I noticed my

insurer only

paid $800 and that squared the bill. Odd how health care is more expensive the

poorer

you are, but I digress.

Questions:

> ULTRASOUND: Annually?? 6-monthly for those with cirrhosis. Looking at

> spleen, liver, intrahepatic portal flow, duct dilatation etc.

My left lobe is severely atrophied and this shows up on MRCP and ERCP. But

according to

the technician, by ultrasound it scarcely looks abnormal. He was looking at my

ovaries at

the time but we were talking about PSC so he looked at the liver too for good

measure. So

unless the abnormalities you mentioned are suspected, is it worth doing

annually? Never

been a part of the plan for me.

> At the April meeting in Pittsburgh Dr Lindor said that Urso and Silymarin

> (the herbal remedy milk thistle) are the only drugs proven to have

therapeutic

> effects for PSC. It's interesting that

> in Germany it's the remedy of choice for cases of death-cap mushroom

> poisoning. It seems 100% effective in people who eat this common poisonous

mushroom.

I'd be interested in seeing papers on Silymarin/milk thistle and it's

effectiveness in PSC

management. I checked the PSC literature site and didn't find anything that

looked like a

clinical trial, though there's a lot on the topic in regard to other liver

diseases. Any

suggestions?

Martha (MA)