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Posted 2/1/2012 9:15 PM (GMT 0)
Just joined and already several questions have been answered just reading what some of you have experienced with the meds for AIH.  I spent 8 days in the hospital this past October with liver enzymes off the chart. I was juandice and hurting all over and week as a kitten. It came on so fast, I didn't even know I was sick.  Everyone keeps asking me what causes it and I have found no official know cause but I would like to know what some of you who have AIH believe it could be attributed to.
Posted 2/1/2012 9:56 PM (GMT 0)
Hello, Fernmarie, and welcome to the forum. Lately, we've had quite a few new members with AIH. From what I understand, there are usually other autoimmune diseases, such as rheumatoid arthritis or connective tissue disease. If you have one, you are likely to develop more. Other than that, I'll leave it to my co-moderator, Dany, who has AIH herself.

Hugs,
Connie
Posted 2/1/2012 10:04 PM (GMT 0)
Fernmarie,

Welcome to HealingWell!  I'm glad you have already found some answers to your questions.  You will unlikely find the answer to the "what caused it?" question.  It's an autoimmune disease.  Those who acquire autoimmune diseases are usually predisposed to them...family history of autoimmune dysfunction.  They are more prevalent in women.  I'm sure some autoimmune diseases have triggers but no one can say that one thing was responsible for their AIH, as far as I have heard.  Stress is a trigger for flare so try to live calmly even when life gets stressful.  Sometimes AIH can develop after having drug-induced hepatitis, that would be the only time I know of someone knowing their trigger.  More often than not, your body was fighting off a general issue (a cold or something), got confused and attacked your liver as if it were foreign.  So that's why the treatment is the same for those with transplants....steroids followed by immunosuppressant medications which will allow you to wean off the steroids eventually.  If it hit you hard and fast (as did mine) you'll likely remain on immunosuppressants indefinitely.  Future flares are generally harder to get stable/in remission so it's best to try to avoid them.

What medications and dosages are you on?  I'll ask that before I go into my shpiel of what you should talk to your doc about wink    Are you seeing a hepatologist?

I look forward to hearing more of your story.  Look up my older posts, I've had plenty to say on the topic smilewinkgrin    Just click on my name and it'll pull up all the older threads...they go back a while, I've been posting here for 5 years, since my diagnosis.

Posted 2/1/2012 11:32 PM (GMT 0)
Thanks Dany...I am taking 50 mg of Imuran and was taking 30 mg of prednisone. Dr. started weaning me down on the pred. I am currently taking 15 mg and my enzymes levels have jump into the 200 and 300 range. In 1989 I had my spleen removed because of ITP. My immune system was also destroying my red blood cells at the same time. After my spleen was removed, I had no problems at all until 2007 they noticed my liver enzymes were slightly elevated but when I was retested 6 weeks later everything was normal so they thought it was probably due to the wine tasting kick my Mother and I was on. I rarely drink and have not had any wine since my diagnosis. I have gained weight and want to cry all the time with this prednisone. The Dr. started weaning me off because of my insistance. That may have now been a mistake. I certainly don't want to relapse. My current Dr. is a Gastrointestinal Specialist. He originally talked about sending me to Baylor Medical but since I responded so well so quickly he said I could wait. I have not heard from him since getting the recent elevated results. His nurse usually calls me within 24 hours of getting them and lets me know the next step. I should hear from him tomorrow. He is concerned that I have an underlying immunilogical disorder since this has happening again several years later. I will definitley read your other posts. :)
Posted 2/2/2012 9:08 PM (GMT 0)
Fernmarie,

I know the pred sucks but rushing through it is really bad for you.  I'm hoping you have bloods drawn before each decrease?  If your numbers aren't normal, decreasing dosage won't get them there.   I responded quickly as well but I still stayed on higher doses for longer.

Have you heard from the doc yet?

Posted 2/2/2012 11:49 PM (GMT 0)
Yes I heard from the Dr. today and I am back to 20mg of prednisone and He wants me to retest in two weeks. How long did you go between each decrease and at what level does this moon face go away? Do you take Milk thistle or have you done any type of a liver cleanse?
FM
Posted 2/3/2012 12:07 AM (GMT 0)
Fern, I just wanted to mention that "the jury is out" on milk thistle. My hepatologist told me it probably wouldn't help, but wouldn't hurt, either. As far as a cleanse, I'd steer clear of that. Actually, I'd steer clear of both of these, as you are trying to get stable. You don't want to throw anything into the mix that might adversely affect your levels. However, I'm speaking as a hep C/transplant patient. Dany may feel differently.

Hugs,
Connie
Posted 2/3/2012 2:54 AM (GMT 0)
I totally agree with Connie.  Since there hasn't been approval that it is actually beneficial, I don't see the need to possibly add insult to injury.  Your liver needs less stress while it's trying to regenerate.  No extra herbal remedies (of which you should always check with your hepatologist anyway...that and any OTC meds), NO ALCOHOL...can't stress that one enough and ask your doctor which they would prefer you take for any pain...Advil (ibuprofen) or Tylenol (acetaminophen).  There are opposing views from all docs. eyes   So it's best to be sure you are on the same page with your own doc.

I should really save a list of my med schedule from the way back machine smilewinkgrin    I keep my pocket calendar from back then just for this purpose!

Pred:

40mg almost 5 weeks

30mg for 3 weeks

20mg for 3 weeks

15mg for 2 weeks

10mg for 3 weeks

7.5mg for about 6.5 months

5mg for 11 months (including the 2 months it took fo the uber slow wean to zero).

Immunosuppressants:

CellCept 500mg twice a day (BID) started one week after pred.  It has a quick onset and since I was super ill they wanted something on board quickly.  After 2 weeks that was increased to 750mg BID.  After 2.5 months I added 50mg azathioprine (Imuran).  Since that takes about 2 months to get on board, I stayed on the CellCept for the next 2 months then stopped taking the CellCept.  We increased my aza to 100mg 2 weeks before I started my final pred wean from 5mg to zero.

All my horrible side effects were gone by the time I got to 10mg pred...the moon face, the hump on my back, the acne and back-ne started clearing up...and sleeping was better a was my temperament smhair .

Posted 2/3/2012 3:38 AM (GMT 0)
This has been very helpful, thanks for being willing to share your experience.
Do you have a special diet or is there anything else I should stay away from?
I don't smoke and I haven't had a single sip of wine since my hospital stay.
FM
Posted 2/3/2012 3:55 AM (GMT 0)
No. I'm not so good with caring about what I eat. I don't generally eat excessive amounts of red meat even though it's my prefered meat. I do take an iron supplement because I was anemic when diagnosed. We don't like to mess with my mojo so I still take it. Do you take a multivitamin? Calcium with Vit D? If not, talk to your doc about it. Oh, the red meat thing, it's the most difficult animal protein for your liver to digest so try limiting that. I'd watch salt intake as well. That'll help with not retaining as much fluid, I had pretty bad cankles on pred and my knees would be twice their size by end of the day! Speaking of pred, ask for a baseline bone density scan. Pred thins bone so you want to monitor it. I have one annually. I have an annual abdominal ultrasound as well.
Exercise as much as you can. It actually helps you stay more sane and helps keep prep weight down. You want to maintain a healthy weight, even if that only happens once you get off the pred. You need to try to ward off fatty liver disease as much as possible :-)
Oh a biggie...did your doc prescribe a proton pump inhibitor like Prilosec or Prevacid? Pred is harsh on stomach lining so if not, talk to your doc!
It's my pleasure to help! Ask any questions you have!
Posted 2/3/2012 3:01 PM (GMT 0)
the dr does have me taking prevacid and i have had a bone density test....i take vit d , fish oil and NAC, garlic, turmeric, folic acid , beet extract, and b12 shots. I drink about 2 gallons of milk a week because I crave it like crazy....not sure what is causing that...thanks for the exercise tip...oh I also take Celexa it seems to help my sanity.
Posted 2/14/2012 8:58 PM (GMT 0)
Hi fenmarie

Have also got AIH after have had Remicade.
It´s like Dany is saying: avoid any herbal remedies and don´t strain your liver with paracetamol or other meds that can stress the liver more than it already is.
I´m taking a drug not so common because I had pancreaspain from azatioprin so I am on chloroquine and it works for me. HAve had my AIH sience oct 2007.
Wish you luck with your treatment and hope to hear from you how it goes!

:-)
Posted 2/14/2012 11:13 PM (GMT 0)
Thanks for the info.....most of the research seems to indidcate toxins as being the culprit....I would like to do some type of detox but I don't want to make matters worse. Are you familiar with Dr. Sandra Cabot? She is a liver specialist that has a website that has been very helpful.
I really want to get off this prednisone!!
Posted 2/15/2012 4:23 AM (GMT 0)
fernmarie,

I do not believe a liver cleanse will help anyone....for anything.  Yes your liver is there to remove toxins and cleanse the body...but that's its job.  It doesn't need extra help doing it.  It's a perfectly capable organ.  While I'm sure these liver cleanses generally don't cause any harm to the NORMAL person, us with liver issues or issues that affect the liver such as any autoimmune liver disorder have to be particularly careful with the burdens we can add to our already threatened liver.

I'm not sure where you found "most of the research" that claims toxins are to blame.  You have an autoimmune disorder.  People with predisposition to AI diseases are susceptible to a wide variety of autoimmune dysfunction.  The trigger is generally unknown...in some cases, it starts as drug-induced hepatitis that doesn't resolve and triggers the body to be confused as to which cells belong there and attack the liver as if it were foreign just as the myelin sheath on nerves is attacked in MS.

Please don't be focused on potential homepathic remedies.  AIH is potentially fatal.  If you don't follow the "usual" course of treatment and start believing a cleanse will fix it, you could push yourself into cirrhosis and subsequent death. 

Everyone in your position, and you are not alone, hates the pred...but being on it won't last forever IF you do it properly.  I've been off the pred since Dec 2008 and my numbers have remained completely normal just on the aza...knock on wood tongue    I did my pred time as indicated and I wouldn't have changed it for anything as I am alive and well.

Posted 2/15/2012 2:50 PM (GMT 0)
Dany,

Thank you so much for your concern. I have been taking the normal course of treatment , I was just hoping that a homeopathic regiment might speed things up. I have noticed when I eat certain foods, I start itching again. You are right
I need to be patient. The prednisone is yucky but it is saving my life and I need to focus on the positive.

fm
Posted 2/24/2012 8:02 AM (GMT 0)
Hello all ~ My name is Tim I'm 37 yrs old and my wife is 38 we have two small children. My wife lays in a hospital bed tonight with what they think is AIH we are awaiting a few more blood tests for a better answer. I'm scared for her and my children, I've been reading all your posts for hours and even more scared. It started 2 weeks ago with chest pains and what she thought was acid reflux and gas. She went to the doctor who was on call and she said the same thing and it will pass. It got worse and worse as each day passed. This last Tuesday she went and saw her primary dr and did some blood work on her and found her liver enzymes around 3400 got admitted that night. Her levels went down for the first time since Tuesday but not by much,Her blood is too thin to do a biopsy. They are hoping for the last three results to comeback tomorrow and then will probably treat her with predisone. She too had hives like a lot have mentioned that started about 3 years ago that were almost seemed tormenting her like a an evil parasite. She had blood work done in December 2011 and all was normal this came on like a freight train can't remember who but she too had a cold with a violent morning cough before this happend Don't know what else to say other then thanks for posting. my email is [email protected]
Posted 2/24/2012 3:52 PM (GMT 0)
Hi Tim,

My prayers are with you and your family...If it is AIH no fear , it is very treatable. I was recently diagnosed after spending 8 days in the hospital not knowing what in the world was happening also. Once they started me on prednisone the liver enzymes dropped dramatically and I was a whole new person. I turned to the internet for more information and found that HealingWell has  wonderful people who have had the same experience and are very willing to share their experiences. Dany is the moderator for AIH and you will probably hear from her. She has been a great comfort as has all the others who have been so sweet to share their struggles. I hope you get an answer soon. Please keep us posted.

fm

Posted 2/24/2012 4:57 PM (GMT 0)
Fernmarie,

Thanks ;-) I am more than happy to share my side and what I have learned with this illness. I always wish everyone had my experience as I know that a few have gone on to transplant but that is a small percentage of AIHers.
Posted 2/25/2012 7:46 AM (GMT 0)
Thank you for your prayers and responses, We met with the doc's today and the are waiting for the last couple of tests to come back which they say one is for AIH. They say if that comes back positive they will treat her with 45mg of predisone and if it comes back negative then we wait till my wife's blood thickens to have a biopsy. They have her drinking some liquid that stinks like rotten eggs every 4 hours I can't remember the name as everything is starting to be a blur with my lack of sleep it starts with an M. Thanks again for the posts I will keep you updated

Tim
Posted 2/25/2012 2:26 PM (GMT 0)
Tim,
I had responded to your thread that had the same post as you had posted on this thread. I'm not sure if you read my response there but please do. Connie titled your thread "wife newly diagnosed with AIH".
Posted 2/26/2012 4:26 AM (GMT 0)
I wanted to give everybody an update on my wife's condition, It got worse overnight and the hep dr recommended starting BUDESONIDE 9mg a day. They are loading her up with potassium, and something called mukamyst 6 times a day? not sure if I'm spelling it right. Her Jaundice is pretty bad as well. Thank you Dany and Connie for the help I shared your response to wife and she starting crying with a sense of relief that someone else is out there. It was the first time she cried through this whole thing. THANK YOU ALL FOR BEING THEIR

Tim
Posted 2/26/2012 5:13 AM (GMT 0)
Tim, I'm sorry your wife's condition has worsened. Hopefully, it will get better soon. Mucomyst is used for acetaminophen toxicity/overdose, pneumonia, bronchitis, emphysema, cystic fibrosis, and other conditions. Budesonide is used for rhinitis and asthma. Has she been congested or having trouble breathing?

Let her know that she is definitely not alone and that there's a forum full of people who care.

Hugs,
Connie
Posted 2/26/2012 5:16 AM (GMT 0)
Tim,

I agree about the forum. I've cried over the postings many times...to discover you are not alone is wonderful. These folks have gotten me through 18 months of nightmare...and we are on the uphill now...and I hope your family will be soon too.

Carol
Posted 2/26/2012 8:06 AM (GMT 0)
Thank you Carol and Connie ~

Connie I was reading your reply back to me when my wife called and told me they were going to do a catscan and x-ray for shortness of breath and chest pains. I quickly dropped of my kids at a friends house and rushed to the hospital. Everything came back ok thank god, but I did ask why the hep dr prescribed Budesonide instead of Prednisone and why such a small dose 9mg compared to what I've seen on this site and others anywhere from 25mg to 60mg of Prednisone. He did some research and said that preliminary results have shown it to work well with AIH with less side effects and that the dosage is high where it's usually prescribed in the tenths of mg for Asthma. Thank you Connie for your wisdom and for this site and everybody on it gives my family so much support.

Tim
Posted 2/26/2012 2:51 PM (GMT 0)
Tim,

You are correct.  Entocort (budesonide) is a newer treatment for AIH.  It is used more often in Europe and elsewhere but is definitely being prescribed more here in the States.  From the folks I have heard from, it's great.  Far less side effects than the pred as it has a more direct action internally.  So there's less physical changes (moon face, acne, etc) and less emotional changes.  I am very hopeful her numbers come down quickly as did mine.  I was the color of the sun when I was admitted to the hospital.  They started my pred the night before my biopsy as they were 98% sure it was AIH and by the next morning my bilirubin had dropped to 16 from 23.

The shortness of breath is likely from some ascites.  I'm sure they'll end up giving her some lasix (a diuretic).  I was on it for a little while too.  Then when she shows some response, they'll confirm with the biopsy and look for extent of damage.  Please talk to the doctor about a transjugular biopsy.  That's what I had because I wasn't able to clot...so they did my biopsy right away that way.

Then also speak to them about an immunosuppressant.  As I said in an earlier post...the week after I started on steroids, I was given CellCept as it has a quick onset.  I do believe my docs did well by me going this course and not waiting months to start the immunosuppressant.  I was later switched to Imuran (azathioprine) as it's an older drug (cheaper and more clinical data) since I'll be on it indefinitely but that one takes 2 months to kick.  They wanted to make sure I was stable on the other treatments first.

Hugs to you and your wife!

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