[Guest guest]

1) To confirm the diagnosis as biopsy is a poor way, more exactly a

difficult way to diagnose PSC. MRI is a poor second to ERCP because one is

looking for changes in the bile ducts which may not be easy to see via MRI.

The only other reason to have an ERCP is see is there is a dominant

stricture to stent, now or in the future. Perhaps extent of the disease

latter on may be helpful, but blood tests and symptoms can be more useful in

this regard.

2) You should talk to your doctor about higher dosages of Urso as this is

the only thing that has proven, albiet in small short length studies, to

slow the disease process. You might want to find the study report in one of

our archive emails to present to him/her.

3) If you are early on in the disease, a CBC, INR, and liver function tests

such as ALT, AST and bilirubin are all that are really necessary. And I

would suggest that these be done only twice a year for a while, as they

aren't going to be helpful except as a trend. If you have had no symptoms

for any length of time (years is what I'm thinking) the other tests for

cancer and so on are not worthwhile, especially since they are poor markers

or indicators of disease. With a baseline MRI, biopsy and Ultrasound you can

have some of these tests done at semi-regular intervals, 2-5 years, to see

what is happening as your disease progresses.

4) A high protein, low carbohydrate diet is hard on the kidneys. Liver

disease itself can cause kidney damage, as can immunosuppressants. Therefore

I would stay away from these kinds of diets. A good balanced diet is

preferred for most diseases. In this case, a low-fat diet is also good at

this point and beyond. When your disease has progressed significantly you

may wish to consider a vegetarian diet which will reduce the risk of one of

the worst possible symptoms/signs of this disease: hepatic encephalopathy.

This starts with confusion, progresses to coma and death if not treated. So

its not something to fool with. I managed to avoid it, in part because of my

diet and perhaps some luck. The reason a vegetarian diet seems to help, is

that animal protein is the source of the ammonia produced by the bacteria in

our colons that cannot be cleared by our diseased livers late in this

condition. It's worth doing in my opinion.

There will be others who think more intensive testing is worthwhile, but

this is opinion only, not fact. And early on, if your disease is not

progressing rapidly, there is no reason, especially if you have to pay for

your testing.

Aubrey