Dear Motorcycle Mama: You've received some great advice on this forum. I was just diagnosed with AIH on Tuesday by one of the country's leading hepatologists who heads up the Vanderbilt Hospital liver transplant center. I have been dealing with trying to find a definitive diagnosis since April of this year. They still really aren't sure if it's auto-immune--there weren't enough "classic" symptoms, but we had to go ahead and start treatment (with 40 mg of prednisone and 50 mg of Imuran each day)of my liver to prevent further scarring. That's why you need to get your son's liver under control. The scarring leads to cirhossis, which destroys your liver. He is too young to be thinking about
liver transplants and so forth. My advice echos some of what you've already heard: He should take the prednisone and imuran as directed by the doctor. This will get the inflammation down. Yes, the imuran will suppress his immune system, and he will be susceptible to colds, etc. He should stay away from sick people and he should keep his hands clean and not touch his eyes, nose, ears, mouth, etc until he has disinfected them! Don't kiss any germy girls! Don't eat or drink after ANYONE! This is very important. It is hard for a 19-year old to realize how serious this disease is. The liver detox foot thing is hype. It will not help him at all. Look it up on-line and they will tell you how the reflexologists and so forth make the water turn dark when you put your feet in the bath. Don't waste your money or your time. I researched this in my desperation, so I know. He needs to quit taking any medicine of any kind unless given to him by the doc who is treating his AIH. No over the counter meds, nothing!! No alcohol whatsoever. His liver is in crisis. Too bad about
his hair--his liver health is more important. Hair will grow back, or he can shave his head and look really cool. Don't take any medicine for hair loss!!! Don't waste money on hair loss products. He will have side effects from the drugs, but he doesn't have to take them forever. He is young and should be able to bounce back from this a lot quicker than someone like me (59 years old, healthy until this happened!). I think you or the doc should let him know how serious this is. His life depends on his mature handling of this condition. You can't watch him every second, but he MUST take his meds, he must stay away from germs, he must eat healthy (no fatty, fried foods!), not drink booze, get his blood tested and get involved in the management of his disease. If you want a second opinion, go to a hepatologist--they aren't in every city--I had to drive from Knoxville to Nashville to see one. BUT, you probably don't need a second opinion if the liver biopsy was definite about
the AIH. A regular GI doc can handle that. My GI doc here in Knoxville sent me to the hepatologist in Nashville because the liver biopsy did not show AIH and HE wanted a second opinion! I don't have all the symptoms of AIH. My only "bad" thing is ALT and AST levels that are now in the 500 range (but at the beginning, they were in the 5000 range!) and this is causing inflammation in my liver and scarring--not good. So, this is your final lecture of the day. You are on a good forum for information on this condition, because we've all been through it and can help each other. As you can tell, the prednisone has made me a very "talkative" person. By 11 a.m. this morning, I had already cleaned my entire house, done four loads of laundry and was trying to decide if I had time to build a fire pit in the back yard. It does make you hyper and busy busy busy. Good luck and keep us posted!!