Help with biopsy results!

[Lisa1150]

I got the results of my liver biopsy and am still trying to digest the bad news. I have Autoimmune Hepatitis and probably also have Primary Biliary Cirrhosis. The hepatologist said that I have both of these diseases and that he would speak to the pathologist to determine which one is the primary process, whatever that means. Does anyone know why is it so important to know which one is dominant?
The report states that I have grade 2 of 4 chronic hepatitis with rosetting, focal plasmacytosis and rare focus of lymphocytic cholangitis. Stage 0 or no fibrosis. No stainable iron, copper or a1at globules. The histological features are suggestive of autoimmune hepatitis. With focal lymphasitic cholangitis, there is a potential component of PBC. However, this needs, serological, clinical and LFT correlation.
The hepatologist said that the course of action is to watch my liver enzymes, testing every 3 months.  If my AST or ALT rise to the 200 level, he would put me on Predisone and another drug.
Also, now that I have been off my statin for a couple of months, my cholesterol is in the mid 300s.  He said that I don't need to restart my statin because these higher cholesterol levels do not contribute to heart disease in someone who has these two liver diseases.  Does anyone here have high cholesterol along with liver disease and not taking a statin?
Lastly, I was told that I should drink a lot of coffee and give milk thistle a try.
I am making an appointment to see a doctor for a second opinion at the Hepatobiliary clinic at Mayo in MN.  Until then, any suggestions?  Is there a good book out there that will help me learn about these diseases? I have been reading a lot lately, but just pieces here and there.  I would be great to find a good resource in one spot.
Oh, I guess its time to move to a different forum, I will post this in the cirrhosis forum as well.
Thanks so much!
Lisa

[Lisa1150]

Great idea!  In the past month I have almost filled a 2" binder with labs and reports!  I still have so much to learn.

[jpv1]

Take your notes to the doctor with you. My doctor told me I have 2 times the information than any of his patients. This made me feel like Im doing all I can. He also said I was well informed and ask great questions. remember there is no such thing as a stupid question

[Lisa1150]

Thanks so much for the great information!
And Hector, your saying that my disease was caught very early made me feel so much better.  I didn't know this.
I have an appointment at Mayo on 3/11 and expect to be there for 3 to five days. With the info learned here, on this forum, I am feeling prepared for this journey.  Thank all of you and this forum!
Lisa

[HectorSF]

Good support folks!!!
Nice job!

Here are great papers for how doctors approach your diseases. They may be difficult to understand right now but in time you will become an expert if you want to and you will find these invaluable to understanding your illness and the cause, diagnosis and treatment standard approaches to managing the illness.

AASLD PRACTICE GUIDELINES
Diagnosis and Management of Autoimmune Hepatitis

'Two treatment regimens are equally effective in severe AIH. Prednisone alone (60 mg daily) or a lower dose of prednisone (30 mg daily) in conjunction with azathioprine (50 mg is usually used in the United States.'

http://www.aasld.org/practiceguidelines/Documents/AIH2010.pdf

AASLD PRACTICE GUIDELINES
Primary Biliary Cirrhosis

http://www.aasld.org/practiceguidelines/Documents/Bookmarked%20Practice%20Guidelines/PrimaryBillaryCirrhosis7-2009.pdf

Going to Mayo is the best thing you can do for yourself. You are very wise. You disease was caught very early which is the best time to begin managing it. Keep learning and questioning questions and I promise it will not seem so scary. Many people are living with these disease and you can to.


Hector

[Lisa1150]

Thanks Mike, will do!

[mikesimon]

I would post your question at the liver transplant expert forum. The doctor answers questions that are not transplant related. Here is the link to that site.

http://www.medhelp.org/forums/Liver-Transplant/show/274


Mike

[Lisa1150]

Thanks!  Off to read!

[pooh55811]

I was looking at some articles and will give you the links. Maybe some will be helpful:

http://www.japi.org/july_2010/Article_13.pdf

http://www.cghjournal.org/article/S1542-3565%2811%2900316-8/fulltext

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2716591/

http://www.casesjournal.com/content/2/1/7491

https://www.med.upenn.edu/gastro/documents/LancetPBC.pdf

http://www2.niddk.nih.gov/NR/rdonlyres/4C43D490-2A5C-4506-A16B-43C14645E3B9/0/ldrb_chapter9.pdf

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3530748/