Marge, I just wrote you a very lenghty reply to your post. I hit something wrong and it is gone. UGH.. So I will not rewrite it all over again. I did ask when and how did you discover the cirrossis? Did you have fatigue or any other symptoms beore you found out?
Also, the name of the medication that I will be going on after I wean more is called cyclosporine. I have not been on anything but prednisone because I could not take imuran. So the doctor put me on 40 mg of prednisone and it started bringing down my L enzymes right away. It has also helped the other autoimmune disease I have, psoriatic arthritis. I am now on Humira for the PA.
I'm glad to have found this board. I am in a support group on yahoo, but had not found a board to post on. Actually I have only posted on one other board, not health related, so I am still finding my way around here. I'm glad to be here.
I'll go for now, hope to hear from you soon.
I just read your post. I have heard of liver disease with no symptoms for years, and then a biopsy shows cirrohis. There can be so many things that cause fatigue and it can be passed off for many things.
I changed doctors after 2 years of increased L enzymes and him telling me that it was probably a medication I take for depression, and that we would keep an eye on it. I felt like he was not taking the fatigue seriously. Some days I slept 14 16 hours after crawling out of bed for bathroom, eating, ect. I had no energy. I said to my new doctor, recommended very highly," Please find out what is wrong with me. I feel like I am dying." She wasted no time getting me into a GA. I do not have a hepatologist yet, and do not know that I will get one. My Gastro DR. is very aware of autoimmune diseases. He has crohnes disease. I can't spell that work, still. And he has had it for 10 years. He is compassionate and very informed.i have been advised to go to a hep. but I have such a good relationship with him, I hesitate to do that unless my MD ( who is very involved in my treatment) and, or, my GA suggests it.
I do believe in his ability and he respects my research and input that I have done on AIH and liver disease. I get my reports, test results, ect. and keep my own file to ck my enzyme levels. The biopsy report I read and the letter he sent to my doctor hit me pretty hard, but I asked for the records. I also asked him how much is damaged on a scale from 1-10 he said 7 1/2. So, I know I have some scarring, the bridging, the necrosis.
I am very encouraged that you have cirrohis and have done so well. Is it possible that something attacked your liver suddenly? I have heard of that happening. What is your prognoisis?
Sorry so many questions, I am newly diagnosed and want to learn all I can. Are there any others on here with AIH. It is rare and people seem to get really quiet or don't know what to say if you say the word hepatitis. Or, if you say cirrohis. My GA told me to not bring it up to people that did not understand it, to be vague. He said I would be mis judged. If yo have cirrohis, you are bound to be an alcoholic, and if you have hep. you have had sorid sexual encounters or drugs. Sad, but it's true. I have found out. But I was also uninformed until diagnosed, so I can understand. I just wish there was more out there on AIH diseases. For some reason, it seems to be tabu. Maybe that is my imagination. After all, hepatitis only means (inflammation of the liver). But it gets a bad rap.
That's all for now. I hope to hear from you again. Its amost 8:AM here in Louisville, KY, time to great the day. I hope you have a good one.
Oh, I'm 54, widowed in 99, I have a loving, supportive, partner, Willie. 3 children and 4 grandchildren.
Thanks for being here.
Hi, After reading back through the posts I realized I repeated myself so many time.
Sorry for those who have to hear all this again.
Thank you Judy,
Im just glad someone responded. I am confident that I will be ok and my doctor seems to think the same. I feel bad talking about my low LFT elevations, but still scared. It's been so long since my numbers have been out of range. I was so nervous to come off the medication back in April, but got used to it and actually felt fabulous. I was going for monthly bloodwork and according to the doctor we caught it early. My husband and I agree that my health comes first, which definitely helps...I just want to be normal. My mother keeps telling me that I will be able to live a normal life, I just need to hear it from the doctor! I'll talk to him tomorrow. If you don't mind me asking, how long have you been dealing with AIH and has the doctor given you any prognosis?