Autoimmune Hepatitis - Need info please

Sorry....I forgot to add a subject title on my last post so I am re-posting now. Not sure if it will make a difference on it being viewed or not.


Hello everyone. Please forgive me if I come across as ignorant on everything. I have never been part of any type of community forums or chats in the past. However...my mother was just recently diagnosed with autoimmune hepatitis. She had symptoms of it last fall, but was not conclusively diagnosed until this latest flair up. She has been a widow since we lost my father to cancer 7 years ago, so I have been her primary caregiver since she has recently fallen so ill. I have so many questions that I need answers to. I have been googling quite a bit...that's how I found you guys! How long does it normally take a person to recover from a flair up? This last time she ended up in the hospital for about a week until they diagnosed her by means of a liver biopsy. They started her on Prednisone and Imuran to suppress her immune system. Her symptoms are sever fatigue, pain, jaundice, very dark orange urine, nausea, muscle weakness, and very high liver enzymes (some were in the 3,000's this past time). The biopsy showed signs of early cirrhosis. She is also covered in bruises. She is home now, and has been on the steroids for about 6 days now. Her color does not look any different and she still can not walk more than about 10 feet at a time without having to sit and rest. Please any information or advice on the disease or the meds she is on would be much appreciated. As I stated before, I understand the severity of this disease and I am trying to arm myself with as much info as possible. Especially the important DO's and DONT'S!
Oh yeah, I forgot to mention, my mother is only 55 years old.

Thanks and God Bless,
FamilyRock

FamilyRock, welcome to the forum.  I really cannot add anything to what Dany said.  There are a number of members here with AIH and I know you will receive some good information and great support from them, particularly Dany.  Your mom is still young, so hopefully the doctors can get her AIH under control and managed correctly.  Bruising is common with liver disease.  The dark urine could be from dehydration,  certain medications, her jaundice (which is caused by high bilirubin) or kidney malfunction.  She should eat a healthful diet.  Beyond that, go to hepatology appts. with her and ask questions directly of the doctor, as Dany suggested.

Hi FamilyRock,

Prednisone is hard on stomach lining. The proton pump inhibitors decrease acid production which helps protect it from the pred. Be sure to bring it up. How often is she going in for bloods? They'll start decreasing her pred when her LFT's are in normal range. The Imuran takes 2 months to take effect and that'll help her get off the pred.
I started at 40mg (in Jan 2007-for almost 5 weeks), then went to 30mg (for 2 weeks), 20mg for 3 weeks, 15mg for 2 weeks, 10mg for 2 weeks, 7.5mg for 6.5 months and then down to 5mg for 11 months. Imuran was increased to 100mg prior to the 2 month final pred wean from 5mg to zero. Before every drop, I had lab work done...that's a must!! I have been off the pred since Dec. '08 and fingers crossed, all is well! I was just at the hep's office on Tuesday and I'm still normal! I did start Urso last fall as we thought I was having cholestasis from the imuran and I didn't want to risk a flare and start decreasing my dose. The Urso (a bile acid) is helping my bilirubin stay where it should be.
Why is she taking the imuran at night? I have always taken it in the morning with my pred as that's what my hep told me to do. I take 2 calcium with D...one in the morning and one at night.
Her dark urine could be from the jaundice. My color got better after a couple of weeks. I was an orangey color initially as my bili had peaked at 23.3. The pred caused insomnia, hyperactivity, irritability and the usual physical effects (moon face, hump on upper back, acne, and facial hair). All of it went away by the time I was on 10mg. For the insomnia, I didn't like the sleep meds (Ambien and Lunesta). They just didn't work well for me. So about every 3rd night I took a xanax and slept like a baby and felt pretty chill in the AM. If she gets to that point, be careful with any of the sleep meds she takes (if she so chooses them). The Xanax is addictive. Luckily I don't have an addictive personality and regulated it by not taking it every month. I only needed the help for a couple of months thru the high doses. I was on the prometh as well but only took it rarely.

It sounds like she has a great diet! I gained about 40lbs on the pred. I have a sweet tooth to being with so it got carried away on the pred! I'm almost back to my pre-sickness weight though!

OK, that's long enough for now! Oh, Connie is correct about the bruising. It comes with liver disease and the pred will also increase that as well as cause her skin to thin a bit which makes the bruises more visible :-(

Sounds like you're doing a great job taking care of mom,

Dany, thanks for all the great info!

Mom is to have the blood tests every two weeks for now until the doctor decides to bring it down to once a month. If he is going to lessen after that I'm not totally sure. As for the times for the Pred and Imuran, that's the dosing schedule they started her on in the hospital. They said they did not want to give her both at the same time due to her nausea. They said it would work best to separate them by about 12 hrs, sort of like time release into the system. I will definitely ask her doctor about it though. If there's no harm in her dosing schedule right now, I may propose we leave it the same. She's not showing any negative effects of any of the meds right now, however I do know it takes a while for the side effects to actually rear their ugly head. As for the calcium + vit D, the doctor told her that the human body can not absorb more than 500mg in a 24 hr period and if she takes more than that in a day she would just be passing the rest right out of her.


Pink Grandma,

Thanks for the warm welcome! I will have to agree with you about this site. Like I said in my introduction post, I truly have never been part of any chat rooms or forums before - but this one seemed well worth my time! Everyone here seems so knowledgeable and willing to help.
Looking forward to learning more.

Happy thoughts and warm wishes to all,
FamilyRock


P.S. If anyone is wondering about my screen name - I'm always the person in the family that everyone feels is the strongest person to lean on or handle any crisis.

Dear Family Rock

I got AIH when I was 56, and I also had high enzymes.  It takes a long time to recover from a flair (months), but I can tell you that I am doing well.  I am a personal trainer and I have four clients and two aerobic classes a week, plus working a more sedentary job for 30 hours a week.  I live alone and do all the house/car work.  I have a 26 year old son, and I feel good !   I take cellcept (an immunosuppressant) and a form of steroid (budesonide).   I get blood work monthly and I have mild nausea at times (kind of like a strong "I'm full" feeling).   You can recover, and do well, even when things look so bad.  Keep posting!!!!

Pix