Autoimmune Hepatitis - Need info please

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FamilyRock
New Member


Date Joined Jun 2010
Total Posts : 3
   Posted 6/10/2010 10:48 AM (GMT -7)   
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

DGinSD
Forum Moderator


Date Joined Apr 2007
Total Posts : 839
   Posted 6/10/2010 12:17 PM (GMT -7)   
Family Rock!
 
Welcome!  I too have AIH.  Recovery from a flare certainly takes longer then 6 days.  I'm sure if you search my posts, you'll find the one where I wrote out a bit of what happened to me.  Everyone is different in their responses to the meds.
 
How much pred and, I'm guessing, Imuran (azathioprine) did they start your mom on?  Having cirrhosis does make hers a more severe case but it doesn't make it as doomsday'ish as you may think.  The liver is an amazing organ capable of regeneration.  The prednisone will stop the inflammation which is contributing to the cirrhosis.  That's when the need for the immunosuppressant will come in to prevent (or try to prevent) future flares.  Since you've been researching, you know it is an overactive and confused immune system that caused the disease in the first place.
 
Have you gone to her appointments then?  So you've chatted with her docs?  Is she seeing a hepatologist?  Whenever you go, bring a notepad with all your questions and space for answers so you don't forget the things you want to ask or what the doc has to say.
 
Have you been forewarned of the side effects of the prednisone?  She should have a baseline bone density test (with her being in her 50's she should anyway) but the pred is a bone thinner.  Have they put her on a proton pump inhibitor to protect her stomach from the pred?  I was on Prevacid which is OTC now.  Always check everything with her doc first though.  She should also be on a multivitamin and calcium with Vit D....if they didn't tell her, then call and ask.
 
OK, I don't want this to get tooooo long but ask away and I will answer what I can!
 
Take care of yourself too and tell your mom she isn't alone!
Dany
 
Diagnosed with AIH January 2007,
CMV (cytomegalovirus) June 2008
Raynaud's February 2010
meds: Azathioprine 100mg, Ursodiol 250mg BID
 
 


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 6/10/2010 3:34 PM (GMT -7)   
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.
 



hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


FamilyRock
New Member


Date Joined Jun 2010
Total Posts : 3
   Posted 6/10/2010 9:00 PM (GMT -7)   
Dany,

Thanks for the response. Mom is on 30mg of Prednisone and 50mg of the Imuran daily. (Yes, Azathioprine is just the generic name for Imuran). I have been keeping a daily med log because of the amounts of different meds that they have her on right now. At 9:00am I give her breakfast and the Prednisone; about 1:00pm she gets lunch; and at about 3:00pm she gets a small snack, the multivitamin, and the Calcium + Vitamin D 500mg supplement; then she eats dinner about 6:30pm; then the Imuran at 9:00pm with another small snack. She is craving a lot of fruits and veggies. Her entire diet is very low fat right now...she does not do well with digesting the fatty foods. Her portion size is still very small. She also takes Oxycodone 5mg for the headache pain and discomfort - but not very often (maybe once a day if even that sometimes). They also have her on Promethazine 25mg for the nausea. She can take that one every 6 hrs if needed, but she also very rarely takes this one...it usually makes her sleep for about 4-6 hrs after she has taken it.

I have gone to all of her doctor appts with her. She is now seeing a new hepatologist. He is also a professor of medicine, and he is actually listed as one of the top doctors in the nation. He has received many awards for his practice and studies. He told her he has an 80% success rate at putting his patients into remission. This makes me feel a little better. The liver specialist that she saw last fall was awful. He had absolutely no bedside manner. He ordered her first biopsy and then when he got back the inconclusive results, and a blood test showing her levels in the high normal range, he told her she was no longer a liver patient and he could not help her, and then just sent her back to her general practitioner even though she still had many of the symptoms.

I am aware of the side effects of both the Pred and Imuran. It seems like a catch 20 right now. You mentioned a proton pump inhibitor - no they do not have her on this and did not mention it either. What exactly is it and what does it do for her?

Thanks again fo the info and I hope things are going ok for you,
FamilyRock

DGinSD
Forum Moderator


Date Joined Apr 2007
Total Posts : 839
   Posted 6/10/2010 11:44 PM (GMT -7)   
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
 
Diagnosed with AIH January 2007,
CMV (cytomegalovirus) June 2008
Raynaud's February 2010
meds: Azathioprine 100mg, Ursodiol 250mg BID
 
 


Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 6/11/2010 7:07 AM (GMT -7)   

Hello Family Rock.  I just wanted to welcome you to our forum.   You'll find us to be a very diverse,knowledgeable and compassionate group of people.  I might be biased but ....In my opinion we have the best liver disease forum on the web.

We are glad you found us.......take care.....thoughts and prayers.......

 

 


Pink Grandma
Forum moderator-Hepatitis

When the going gets tough....the tough get going! Don't always know where I going but I get there anyways.


FamilyRock
New Member


Date Joined Jun 2010
Total Posts : 3
   Posted 6/11/2010 7:50 AM (GMT -7)   
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.

shadowsghost
Regular Member


Date Joined Apr 2008
Total Posts : 489
   Posted 6/12/2010 9:04 PM (GMT -7)   
Family Rock, you stole my family status.....I also am known as the rock or the rope that ties everyone together. We still chuckle about my grandson, he wouldnt let the hospital stitch his hand till I got there to make sure they did it right and hold him while they did it. The reason we chuckle is his mom is an anesthisia tech and a CNA for this hospital....lol! I wish you well taking care of your mom, glad to see you go to all appointments with her too. Start a binder on all her labs and reports, also a section with meds listed including dates started and changes made. It will help with questions for DR and if you have to see a different DR ie ER etc
Sue
Adapt yourself to the life you have been given; and truly love the people with whom destiny has surrounded you.


pix
Regular Member


Date Joined Mar 2008
Total Posts : 134
   Posted 6/19/2010 6:58 PM (GMT -7)   
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
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