AMA negative Primary Biliary Cirrhosis and immunosuppressant meds

[kelt]

I have had AMA negative PBC for 9 yrs and now have cirrhosis in one lobe. I have tried prednisone with no improvement. I just finished a 9 month trial of budesonide (9mg daily). There was normalization of alt and ast for the first 6 months however the alkp never got better than 2x normal. The last 3 months of the trial my ast and alt started to increase again. My specialist wants to do a trial with methotrexate now and my research indicates that in previous trials this drug has not improved progression of PBC and in some cases worsened the patients condition. Have you had any success with methotrexate? Is it worth the risk to do a trial with this drug, I have read that there has been some fatalities with this drug? Have you had any success with any other immunosuppressants? I have read some encouraging reports about immuran. Do you have any experience with it? My last question is can you suggest a specialist in North America who is the most experienced with PBC? I am having trouble in  my current location finding someone with much experience with this disease. I am willing and able to travel pretty much anywhere. Please feel free to answer my questions with medical terminology as I am also a medical professional. Thanks for your time. Kelt

[mikesimon]

This board is comprised of patients, the vast majority of whom are suffering from hepatitis c. There are no physicians here. I'm sorry about your situation but have no answers regarding treatment or likely outcome. Mike

[jmjm530]

Try posting your question here. They sometimes take non-Hep C/HIV specific questions. : http://www.thebody.com/Forums/AIDS/Hepatitis/

You could also try calling/emailing some of the larger teaching hospitals/groups that do liver research and ask who specializes in PBC. A starter list is:

http://www.bidmc.harvard.edu/sites/bidmc/home.asp
http://www.nyp.org/
http://www.mountsinai.org/msh/msh-home.jsp
http://www.med.miami.edu/sitemap/
http://www.bidmc.harvard.edu/sites/bidmc/Find_a_doc/doc_detail.asp?sid=41414547424742
http://www.hepccenter.org/physsci.php

Good luck!

-- Jim