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Posted 9/8/2008 8:24 PM (GMT 0)

Hello All,

I was recently diagnosed w/AIH about 6 months ago.  I've had a couple of CatScans and also a liver biopsy, the biopsy was conclusive of AIH. Personally,  I think it was caused by an antibiotic I was taking, but of course, the doctors have not confirmed that.

I was initially on 60mg prednisone and it caused me to gain so much weight in such a short amt of time, my feet were so swollen it hurt to walk, I had the buffalo hump in my back and acne, which I never had, even as an adolescent. It made me really depressed because every day that I was waking up I had yellow eyes and the 'moon face'.

But I can say that I'm now on 10mg of prednisone and some of those symptoms have diminished. I've got bright white eyes again and I can fit into my shoes again, and most of my clothes. However, Imuran makes me sick. I just had a horrible reaction to it last night... there is no way that I can take it.

This whole thing has scared me, but at the same time, I know that I can't let it get me down and I need to keep on pushing through. Some days I feel great and others (like last night)... make me feel sad and depressed.  I am glad to have found a forum in which I can express myself and hopefully find some peace at times when I need it.

~L

Posted 9/8/2008 9:49 PM (GMT 0)
HI L and welcome to healingwell.

I too have AIH and am currently on 10mgs of pred and 50 of imuran. For the first month the imuran really made me ill, flu like symptoms, aches pains, fatigue, and hair loss. However they did diminish. There are other immune suppressants that you may be able to tolerate better, cellcept is one tht I know off the top my head, although there are others.

I am glad you have found this forum to be able to express your feelings and know you are not alone. I don't think it matters what has caused the liver damage the commonality that we share is invaluable. We all have good days and bad ones too. Don't let it get you down.

Lucy
Posted 9/8/2008 10:32 PM (GMT 0)
Hi L, I don't have AIH. I am here for my husband. He has cirrhosis and hep C. I just wanted to take the time to welcome you to the forum and tell you that you will be in my prayers.
Posted 9/8/2008 11:48 PM (GMT 0)

Hi, Lady L.  I just wanted to welcome you to the forum.  I have hep C, cirrhosis, and am a liver cancer survivor.  There are several people on here who have AIH, so you've come to the right place.  You will get a lot of support from everyone.

Hugs,

Connie

Posted 9/9/2008 4:34 PM (GMT 0)

My doctor has prescribed cellcept but I haven't had a chance to start that yet.  I hope that it doesn't cause me to be as ill as the Imuran does because I cannot continue to be sick every day from a medication.

Will i have to be on prednisone forever?!?!

I am so grateful to have found the support of you all and appreciate your kind and motivating words!

I have a lot of life left in me so I don't want to let this disorder/disease keep me from living.

Posted 9/9/2008 6:01 PM (GMT 0)

LadyL

Welcome to the forum I also was diagosed with autoimmune heptatis 2 years ago and also was on high doses of prednisone and gained over 20 pds. I also could not take the Imuran and had to go back on the higher dose of Prednisone.  My liver biopsy confirmed autoimmune hepatis caused by Lipator.  My gastro doctor slowly tried to wean me off of the prednisone but when I got down to 10mg it started back up again.  I then went to my Hep doctor at the Center for Liver Diease in Miami Fl.  The doctor then put me on 20mg of prednisone and I stayed at that level until my liver enzymes were normalized for six months she said that patients with autoimmune hepatitis need enough time on steriods to undergo remission, and the most common mistake is try to taper down/off the steriods to soon and not giving the patient the chance to enter full remission.  I then repeated the liver biopsy which showed miminual inflamation I was then told to reduce the prednisone to 15mg for a month, then 10 mg for a month, then 2.5 until off.  I am happy to report even though it took about a year I have been off the prednisone since May 1st and have my liver enzymes done one a month and all is normal.  I have lost all the weight and feel great. So yes it is possible to come off prednisone and go into remission.    I think one of the most important things I did was go to an expert in automiimune hepatis who deals with on a daily basis and not a gastro doctor who may she one or tweo patients with hepatitis.

Good Luck

JJ 

Posted 9/9/2008 7:15 PM (GMT 0)

JJ -

were you just on prednisone or also on something like Imuran or Cellcept?

Posted 9/9/2008 7:16 PM (GMT 0)

Lucy,

Do you know if it having this disorder hinders your chances of having kids?

~L

Posted 9/9/2008 9:06 PM (GMT 0)

Lady L

I was just on Prednisone I could not take Imuran and my hep doctor felt that cellcept probably would also have the same affect on me.  I just had to stay on the 20mg for a longer amount of time since I could not take the other drugs but it worked.

JJ

Posted 9/10/2008 2:47 AM (GMT 0)

JJ,

I was initially prednisone and then they added the Imuran... however, Imuran has made me very sick... and the doctor has told me that Cellcept may cause me to have other gastrointestinal problems. I go for a follow up appt on the 22nd, maybe he will say that I can just be on the prednisone for a while because I can't be sick every day.  My numbers have improved tremendously but I know that they will want to monitor them regulary to make sure nothing goes up again.  prayerfully I won't have to go on too high of a dosage of prednisone and also won't have to take anything that makes me so sick every single day

~L

Posted 9/10/2008 6:13 PM (GMT 0)
Lady L

I have been on prednisone for over two years. To my knowledge being on prednisone will not affect your ability to concieve children but you should talk to a doctor regarding any possible side affects of it or any other medication may have on a pregnancy. I am really glad your enyme levels have lowered. I know in my case I was stabilized at 10mgs for a year and a half before they tapered me to 5 but that was with the imuran included in my medication. Good Luck on your appointment on the 22. Please keep us posted.

Lucy
Posted 9/11/2008 3:32 PM (GMT 0)
Thanks for your input! I defnitely can't take the imuran. i will keep you posted and i pray that my lab results continue to stay at a healthy level!
Posted 9/11/2008 8:50 PM (GMT 0)
Jerry--your letter gave me hope. I am 59 years old and have been making myself sick with worry about this. I took two antibiotics (Avelox and Augmentin) in March and ended up with hepatitis. ALT and AST levels were in the 5,000s! I started getting better, but then counts went back up. Of course, we did all the scans and everything was normal. We did a liver biopsy that showed significant scarring. My GI doc sent me to a hepatologist at Vanderbilt Hospital in Nashville. He is head of the liver transplant dept. More blood work, lots of questions, and he says I don't have all the signs of AIH, but we need to start some kind of treatment to prevent more scarring of the liver. I started prednisone, 40 mg/day and Imuran, 50 mg/day last Friday. The doc would never say that this was caused by the antibiotics. Says he thinks it has been going on longer because of all the scarring, but I disagree. I was an absolute picture of health before March!! Now I've been reading all the side effects of the pred. and the imuran--geez! Anyway, I'm supposed to have blood checked on 9/18 and every two weeks after to see if there is any progress. I'm glad you explained about the remission thing. My new doc wants to see me in three months. I will keep your six-months period in mind and will try to not rush things.
Posted 9/15/2008 3:58 PM (GMT 0)
Sweetmama,

Jerry's post gave me hope too.  I agree with you, before March, I was feeling just fine. I was given an antibiotic (Cephalexan) for Strep and i ended up sick.  The crazy thing is, I generally don't like to take a lot of medicine and never finish an antibiotic despite the prescription orders, but because I had strep, everyone was like you have to finish it.  Two weeks into the medication I had jaundice. My doctors also said that the amount of scarring could not have occurred over a couple of months period.... but if a medication can cause damage to your liver and you're taking it constantly for weeks a couple of times a day... i would think it could definitely damage the liver. Anyway, that is neither her nor there... it is now something that I have to learn to live with and deal with.  This forum has been helpful thus far - it helps me be able to vent to someone who has gone through what i'm going through and understands where my family can't always understand.

I must say that the Imuran wasn't a good match for me, and well I did get almost every side effect they speak of from the prednisone, but i feel that the prednisone has definitely helped as I was on it for a longer period of time by itself without the imuran and my #'s started to come down and the jaundice diminished! THANK GOD!!!

Posted 9/15/2008 9:46 PM (GMT 0)

Hey, guys! 

 I have AIH, and I was initially on 40 pred, with all the side effects--wt gain, high blood pressure, decreased bone mass, increased blood glucose, acne, ankle swelling, the whole works!.. I, too, couldn't tolerate Imuran due to severe nausea, fatigue.  AND, even on the imuran, when they tapered the pred even a little, those enzymes just shot back up!!!  My hepatologist gave me Cellcept, which was much less of a side effect problem (some intermittent nausea) but it caused large intestine damage (toxicity), The hepatologist just lowered the dose a little, and everything got better.  Then, he gradually tapered and stopped the pred.  I was on the pred for about one year, and I am still on 750 of cellcept, with normal liver enzymes!!!  Also, my old energy is back and there really arent any side effects. (and, I lost the weight!!!!!)

 So, there is hope, but be patient, because it takes a LONG time for the liver to recover yeah .  I do go to a hepatologist, not just a gastroenterologist, and this is a good thing, because treating AIH is an art form.  As to cause, I had a cold just before, but no antibiotics, weird foods, environmental toxins or substance abuse.  So who knows????

Pix

Posted 9/16/2008 12:32 AM (GMT 0)
Hi Pix

You are so right it takes a long time for the liver to really start to respond and recover from this disease. I too had felt perfectly normal until i started feeling fatigued frequently. I did not have any colds, flus or infections and had not been on any medication. There doesn;t always seem to be a "reason: to this disease. But there is always hope. I have been able to have a more normal routine with the addition of my meds. Liver enzymes although not normal are the lowest they have been since this all started. So glad Pix that things are going so well for you. Please keep us posted.

Lucy
Posted 9/16/2008 8:12 PM (GMT 0)
Patience is a virtue! 

Like anything else when you really think about it, it takes forever to pass.  With my jaundice, every day i woke up and looked in the mirror hoping to see the whites of my eyes, and for a while i was disappointed. Then i got on the prednisone and i think that the side effects started to take over so i stopped thinking about my eyes and they cleared up before i knew it.  Same with the swelling, my feet were so swollen i couldn't wear any thing but flip flops.  As i tapered to lower dosages of prednisone the swelling started to go away... one day i looked down and my feet were skinny again!  It's just hard when you are in the moment and all you want is to go back to normal and with seeing all of the adverse reactions to the disease, you realize that you're not.

I am so happy to hear that you can get back to normal life as long as you learn how to manage the disease. I am about 6 months into treatments so I'm looking forward to the day that i'm in remission. My family and friends have really been great support throughout this time and now with this forum, i think I will really have an avenue to vent when I need to - to someone who truly understands my pain.

Posted 9/17/2008 1:04 AM (GMT 0)
Hello all, Just wanted to welcome you to and back to our forum. Sorry if I haven't got around to welcoming you guys sooner. But I am very happy that you have found us or have posted again. You have found the most wonderful forum on the net...........not that I'm partial or anything devil

But we do have a bunch of extremely knowledgeable and wonderful members.

Thoughts and prayers to all.
Posted 9/17/2008 1:50 AM (GMT 0)

Pink Grandma, are you ok?

Pix

Posted 9/17/2008 3:09 AM (GMT 0)
Hello Pix.........yes I am okay..........thank you for asking. Just wore out. I think I need to recharge my batteries too. How about you? Hope you are doing well tonight.

Lots of thoughts and prayers......
Posted 9/22/2008 1:53 PM (GMT 0)
I had my follow up doctors appt today.  My lab results have shown improvement... the doctor said that I am in remission but he wants to be sure that I stay that way. Since the Imuran makes me so sick, he has prescribed Cellcept, which he said has some similar side effects such as nausea but some can tolerate it better than Imuran. He said that if it works, he'd like to get me off the prednisone... but until they know, i'm still on it.  He said that soon as I get off of that the weight gain should diminish.  Things are looking better, but as I sat and waited for his nurse receptionist to fill out the prescription for blood work, I felt the urge to cry... my eyes watered but I didn't fully cry... I don't know why i felt this way? Maybe because this is still real, and b/c i don't  go to the doc but every 3 months now, and as long as I feel ok, it doesn't seem so real? I don't know... confused
Posted 9/22/2008 9:40 PM (GMT 0)
Hi!  I'm glad your labs were good.  Hopefully the cellcept will work out ok--sometimes the different medicines can have the same side effect list, but each person responds differently.  I had a good response to cellcept and couldn't tolerate imuran at all......  Also know that the prednisone can cause incredible mood swings, so tearful episodes are not at all unusual and they don't mean that you are getting depressed or anything like that.  But you are going through a major illness, and sometimes, once the crisis is over, the reality really hits.  I remember having a discussion with my nurse practitioner about how natural and expected it is to be upset when something upsetting happens. I always try to be a "brave and cheerful" patient so the caregivers will still like me.  Sometimes that is ok, but there are definitely times to acknowledge, even if only to yourself, how hard and stressful it is to be sick.

We do understand..  Have you gone on the sites for other diseases?  You can get support there, too, even if you don't have the disease.

Posted 9/23/2008 11:40 PM (GMT 0)

I am nervous about the cellcept because if it makes me as sick as the Imuran I am in for a rough time.  I pray that it isn't.

I don't want to be 'the sick one' all the time you know?  6 months ago, I was just fin

I guess I want to know if I will ever get back to living a normal life again??? 

Thanks for the support I may check out the other forums as well.

Posted 9/24/2008 3:15 AM (GMT 0)
Sure, you sure can. I am able to return to my full time job, do martial arts and work as a personal trainer on the side. When I was at your stage, I could basically make it through work on most days, then come home and collapse. You can return to normal, even on the meds. It takes a long time, so keep your perspective.

Ask your doctor about your prognosis! You might be pleasantly suprised.
Posted 9/24/2008 5:15 AM (GMT 0)
Lady L

So glad to hear that your lab works was nromal and things are in remission. That means that the prenisone is working so wonderful news. It is nermal to be emotional over this disease and with the prednisone. I know my husband would tell me when I was on higher dosages partiiaulry, that he never knew what my response was going to be to any situation, cry ro angry. It certainly tends to magnify emotions that is for sure. Try not to worry so much about the side effects of cellcept. Sometimes our own minds set can be the key to tolerating things. Everyone is different about tolerating all medications so this one might e the right choice for you.

Your life can be back to "normal". I know I worked for a long time with this disese and as things have imprved I have been able to have days where I have more energy and can accomplish my goals. Keep your chin up. Things just never come as quick as we want them too.

I will keep positive thougts and prayers for you.

Lucy
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