Primary sclerosing cholangitis - any experience anyone?

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Hi everyone

At the end of this month I will be having a first consult with a female Pt

aged 57, who has just been diagnosed with Primary Sclerosing Cholangitis.

She feels in good health, with no sign of jaundice or pruritis, and very few

symptoms except the occasional bout of what she identifies as " heartburn "

which she has always minimised by drinking lots of vegetable juices and

avoiding too much fatty food. No apparent IBS, UC or Crohn's. The Dx was

arrived at following a series of routine blood tests (cholesterol etc),

followed up by an MRI scan arranged by an alert GP. Her consultant (who she

said was 'ecstatic' at having such an interesting and unusual case on his

hands !!!)has said that there is nothing that can be done for her,that the

prognosis is poor and will eventually necessitate a liver transplant, if one

is available. He is totally dismissive of other therapies, but Pt is eager

to explore all possibilities. I will be seeing her in co-operation with a

colleague who is a nutritional therapist.

Does anyone have any experience with this disease to aid me? All

contributions gratefully received.

Best regards

Alix

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