RE: Newly diagnosed with Autoimmune Hepatitis and PSC

[Guest guest]

1) The statistics do say liver tx 10-12 years from diagnosis. It's extremely variable however. We have members that are 30+ years from diagnosis, still doing well. We also have members with much shorter times. One of the world's foremost expert has said " You're more likely to die with PSC than from it " (or something like that).

2) Actigal/Urso/etc. is (maybe was) the standard treatment for PSC. However, it's recently been challenged with research from Mayo (another PSC expert). It has been shown to have colon cancer protective properties (PSC patients are at higher risk for colon cancer than " normal " UC patients).

3) I'll take the liberty of re-posting a 2006 email:

Liver Cleanse

No such thing. Don't waste your money or further ruin your health. The

liver doesn't need a cleanse, neither does your bowel. Beware of these

foolish hoaxes.

Aubrey, MD

PSC '81, UC '90, LTX '98, Recurrence '05

Some people have gotten improvement in pruritus symptoms (itching) from acupuncture. Some people (with Dr. approval) take supplements, such as milk thistle, SAMe, multivitamins and calcium (with vitamin D).

4) High cholesterol is a common result of liver dysfunction. Eating well and exercising (whatever you can do) will help you be ready, if the time comes for transplant.

These are excellent questions - keep on asking! You may hear different opinions, but I think the above are fairly standard responses. I recommend you write down your questions for your next Dr. visit (I personally have a hard time remembering all my questions).

Arne

57 - UC 1977 - PSC 2000

Alive and well in Minnesota

________________________________

From: [mailto: ] On Behalf Of loganandkarey

....My biggest question is from what I read on the internet most people

with PSC need a liver transplant within 10-12 years of being diagnosed

with it..

My doctor put me on prednisone and immuran and my liver enzyme levels

are going down, but I'm not sure if it's helping with the PSC. I've

read about Actigall and wondered if you all would recommend it to help

with PSC.

Have anyone been doing alternative medicine along with medicinal. Such

as liver cleanses? master cleanse? acupuncture? Has this helped

anyone? Any suggestions?

Also, how is everyone's cholesterol levels. Mine are in the 400's and

they say it's from the liver? I eat very well and exercise so it isn't

that.