Rhonda, there is nothing to be nervous about. They will do a lot of tests, I'm sure, and you will get answers. Your best weapon in this fight against liver disease is knowledge. I applaud your change in diet. That will help a lot!
Please let us know how your appt. goes.
Went to UM yesterday. Saw the former head of the Hepatology dept.
He reviewed my records, biopsy results, blood work results, and checked my hands and eyes and said I don't have chirosis, and does not agree with the other Dr. about needing a transplant. He said I definately have AIH , and he does not accept the Chronic Fatigue syndrome diagnosis over 20 years ago. He feels it was AIH all along.
He wants to see the actual slides from the biopsy, and wants me to try Imuran again, I had tried it before but I felt like crap, but that could have been from being temporarily drug induced diabetic which was not under control at the time.
I am not diabetic now. Everything went back to normal with the reduction of the pred.
I am obviously very relieved, but still don't know what to think..
I have 2 totally different opinions.
I feel ok, tired sometimes, but generally ok. I have energy, I am not yellow.
Going to get more blood drawn today, and start Imuran tomorrow, blood will be checked monthly, and Ultrasound every 6 months.
I am just numb from over the past 1 1/2 years from almost dying, as my liver was shutting down when I first got sick. To going thru hell for over a year, then being told I need a liver, and now feeling ok, and being told I don't need al liver. Does this make sense to anyone.... I just want to cry and its a mixture of tears of joy, to sadness...
I just read your posts. Glad to hear things may be better than previously thought! I didn't have much trouble with the imuran when I initially started. They started my imuran only once I was stable. I had originally started on 40mg of pred. A week later they started 500mg of CellCept BID. Two weeks after that, increased CellCept to 750 BID. Only once my pred was decreased to 7.5mg (3 months later) did I start the imuran. Since it takes 2 months to fully kick in, I piggy-backed the 2 immunosuppressants then dropped the CellCept. I really had minimal effects from the Imuran...hair thinning was probably the worst...some minor nausea but it all went away once my body got used to it. I was given the OK yesterday to start weaning off the pred completely so this morning was my first morning at 100mg of the Imuran. I'll stay on that for 2 weeks to make sure I tolerate the higher dose and then drop 1mg at a time of the pred.
I'll let you know if the higher Imuran causes issues!
I think it's great that you got a second opinion! Also, for all you AIH folks, there's a good Yahoo group out there too of only AIH affected people. This site is fab too...don't get me wrong...it's why I still come here!
Rhonda, it sounds like you saw a really good hepatologist, so I'd take his word over the previous doc. It's wonderful that you have not progressed to cirrhosis! You can get control of the AIH with no further damage, which is a blessing.