AIH and my Prednisone/Imuran Tapering Dilemma

I'm new to the forum. I have had autoimmune hepatitis for 12 years since I was 17 years old. I have been taking Prednisone for 12 years as well as Imuran (Azathioprene) for many years also. My liver is doing good and my levels have been normal for quite awhile. This year I have become concerned about the long term effects of taking these drugs for a lifetime. Anyone with a autoimmune disease who takes necessary drugs knows about the risk and benefit factors of taking such medication and it's something we have to live with. To taper down your medication involves risking the health of your liver, which could lead to organ transplant and higher doses of the same drugs. Not tapering your medication means a healthy liver but chances of suffering from cancer, osteoporsis and other ailments from the drugs.

I'm hoping to communicate with some people on this forum who have taken prednisone and imuran for long periods of time and there experiences. I would also like to know if anyone has experienced a direct life threatening side affect from either drug like cancer etc?

I reside in California and would also like to know if anyone knows a very knowledgable hepatologist in the area who deals with many cases of AIH (Autoimmune Hepatitis)? Any hepatologist outside of California is ok also.

Thanks to anyone who can chat.

Saki

Hi and welcome to the forum. I too have AIH and take prednisone and Imuran along with several other medications, although I have not been on them as long as you have. You are so right about anyone with this disease knowing and understanding the benefits and costs of these meds. I refer to pred as my life saving drug, as it has allowed me gain some of my "normal self' back after years of not knowing what was wrong with me. Thankfully I have not had any of the major side effects of these meds so far, although my last bond density test showed some thinning in my upper vertibras. I do take a blood test every three months, in addition to the monthly ones, that screen for cancer. Unfortunately I cannot remember the exact name of it alpha something. The worst problems so far that I have expereinced is all the burising that seems to come from nowhere and blood that seems to rise to the surface and stay without bruising. I also have tests for diabetis run frequently and my "sugar" levels are running higher than mine did in past tests, thankfully I have not developed that complication. The Imuran intially made me nauseated and I expereined a great deal of hair loss. However those seems to disappear after a while and have not been such a problem in the past year. My hepalogist is at the Cleveland Clinic and specializes in transplant cases and rarer diseases, such as PB , however that is far away from CA. I know he consults with the docs from Mayo clinic frequently and have heard really good things about them. I have also heard great things about John Hopkins and have seen a lot of articles written on UCLA. Not sure there are any off shoots of Mayo in your area or not although they have them in several other areas around the country.

Good luck with your decisons regarding the medications, It would be so difficult for someone as young as you are to look ahead that far. I can tell you that during my last biopsy they found early stage of cirrosis and my belief is that during the years prior too my diagnosis when the doctors here (not in Cleveland) were trying to determine what was wrong with me that this damaged was caused by not being on the appropriate medications. For me personally right now the benefits are still outweighing my risks. Please keep us posted.

Lucy