New Medication for AIH

Hello All,
I have been diagnosed with Autoimmune Hepatitis after blood tests and a biopsy. I had been on 20m Prednisolin since June 05. My blood pressure rose and I had other problems so my tablets were reduced to 10m daily 2 months ago. My consultant said last month that the steroids are causing problems and he would like me to start on Imuran and try and slowly get me off the steroids. I am worried about starting Imuran. I am told that my bone marrow and immune system will be affected. Is Imuran OK and are there many more side effects than steroids? I would prefer to just keep on a low dose steroid, but have been advised against this. Why, if they are keeping my AIH levels down? I am seeing my consultant this week and need to decide about going on the Imuran.
Many thanks

[mikesimon]

As with any drug there are always possible adverse effects but from the little I know Imuran isn't a big threat generally. I would go to Janis at http://janis7hepc.com/autoimmune_hepatitis.htm and read about it there and everywhere else I could find information. It appears that this disease can be controlled if diagnosed early so I would listen to my docs and double check their recommendations by researching. It is my understanding that the Imuran and Predisone are taken together but the Imuran allows for steroid dose reduction. But I don't know much about AIH. I wish you the best. Mike

[johnisme]

Hello and welcome, since mike didn't mention this, there is no doctors on this forum... Best of luck to you...John

[Jody Blonde]

Hi LB, I also was diagnosed with AIH and HCV four yrs ago.  The AIH was causing the most damage at the time so I was put on prednisone & Imuran.  The prednisone has been tapered off to 5 ml per day & the Imuran is 50.  Well for the last yr my HCV has started up so I am now also taking treatment for both.  I am into my 6th wk of treatment for HCV & have had THE TEST over a week ago to see if my viral count has gone down any.  It was at 2.5ml.  I have not had any issues at all with the Imuran & hopefully you can also take it without any bad results.

[Califia]

The thread with your post about the new health challenges is closed, so I 'm responding here.   (No disrespect meant to those concerned with AIH.)    Just wanted to say there's no dobut that you'll battle this one as hard as you have liver disease.   You're a brave heart, and I'm wishing you all the best.

[Maari]

Hi
I have AIH I have been on Imuran alone for 1 year.  I had so many side effects from pred., like weight gain, higher glucose levels, higher blood pressure, night sweats, tingling  pins and needles across shoulders, weak bones, bleeding gums, teeth pain, brain fog, broken rib, and a few others.  My Doctors told me about Imuran, said it was kinder to the body but that it would take awhile to build up in the body before I could get off pred . I have blood test regularly to check for blood counts, so far I have had no negative effects.  Also my blood pressure, blood sugar, brain fog, bleeding gums have returned to normal.  I do have oesteopenia, and am on fosamax for that.

Don't be afraid of Imuran it works.  Try it if your Doctors reccomend it.  They will keep a close eye on you for side effects.  Keep a journal, it is important that you know your body and what drugs do to you.

Take care
Maari

[Kanzou]

There is a number of postings regarding AIH on Delphi Liver Failure Group forum http://forums.delphiforums.com/liverfailure/messages.

[BostonGirl]

Hi Ladies;
         I was reading your posts and was wondering if you would mind sharing a little bit about AIH? I guess from what you've posted, one could have AIH and Hep C. I did not know that. I thought that you either had to have one or the other, but not both. How does the AIH develope and how is it diagnosed?

I've heard that AIH causes a lot of joint pain. I am 4 months post tx and have more joint pain now than I've had in my entire life. Also, I was wondering if the Pegasus tx can induce AIH?

Thanks, Sue

[Tallblonde]

Ditto for me.  Wishing you the best.  

Susan

[annainitaly]

hello maari,
how's that, you had a rib broken... when? I can hardly imagine the trouble you had to manage. are you  ok now ? I do hope so. let me know, please, when you can.
a.

[Tallblonde]

I'm always happy to see your name in one of the threads, but I sure wish you had better news to report.  You've been through so much and just can't seem to get a break.  I know you're not one to complain, so I'll do it for you.  This stinks!!

Keep the faith, Sue.  I know that sometimes it may not seem like much, but you and I both know that it's everything.

Hugs to you,
Susan

[Maari]

Hi
I started feeling very tired, achey (achy), no appetite, yellow with tea colored urine.  They tested me for Hep three times, after many tests, ultra sounds, CAT scans, and MRI, all results came back negative except for a positive ANA.  I had a liver biopsy, was at stage 3 liver diease.  Mayo's said if pred helped I had AIH if not, it was a virus.  I was told they don't know what causes AIH, mostly women get it and that my immune system was overactive and attacking my liver. I was told it is controlable, but not curable.  Also if you have one autoimmune disease it is likely you will get another.  I tested positive for Epstein Barr virus, a numbers of others with AIH also have EBV.  Is there a connection? don't know.

I have been feeling very good for the past year.  I do have arthritis, I was also tested for Lupus. My rheum, told me most of my joint pain was from the AIH.  He put me on Prevacid Naprax Pac, that has helped alot.  I have noticed that there is a differing opinion about pain relievers and what is Ok for a person with liver problems.  I was told tylenol was not good for the liver.

I know there is a guy on this forum was has C and AIH, so there does appear to be alink between treatment and AIH.  A positive ANA is one of the criteria for AIH, there are several types of AIH each has some different conditions.

Does this help any?  I really feel for you with joint pain.  Hope you can get some relief.

Maari

[Jody Blonde]

You can develope AIH from the treatment for HCV, not to scare you if the predisposition is there in the beginning.  When the HCV virus entered my body, I had an autoimmune reaction to it & my body started trying to kick my liver out, it didn't recognize itself if that makes any sense.  The only way it was determined for my was by my biopsy but there may be other tests that will let them know.  I take 600 ml calcium + D everyday for my bones plus a medicine for my bones.  The most pain I felt from the AIH was in the upper body, my arms locked up on me & I couldn't put on my clothes alone which helped them also figure out what was going on.  I hope & pray no AIH for you but it is something you may want to discuss with your Doctor

[Tallblonde]

Your description of your arm locking up on you and not being able to put on your clothes without pain -- really struck a chord with me.  

In the months prior to being diagnosed, I had the same thing happen.  First it was my arm.  I had to put it in a sling for a few days because I was in such pain.  A few weeks later, it was my leg.  I could only walk with crutches!  In total, I think there were roughly 5 or 6 episodes of this sort of thing.  In every case, the pain disappeared as suddenly as it appeared.  Very, very weird.  There was no explanation at the time for what caused these events.  

The good news is...I've had no other episodes since I began taking SAM-e.  I know that BostonGirl hasn't had any luck with it, but it sure seems to make a huge difference for me.  I feel normal again.

Well, I just wanted to let you know that someone else has experienced what you went through.  

Take care,
Susan

[Maari]

Hi Anna

I am fine. I broke the rib last September, just bending over a sofa to move it. That incident led to finding out about the osteopenia.

Maari

[BostonGirl]

Hello Maari;
           Thank you so much for such a detailed reply. I really do appreciate it. Chances are though, I am thinking that I do not have AIH. But, it is good to know what are the signs & symptoms. I find that personal information about someones disease seems to be more accurate than web sites or even doctors, for that matter.

I am however puzzled that there are several types of AIH. The information that I've read say that there's only 2 types. Maybe the site was old and the information needs to be updated?

I am only 4 months post tx, so I am guessing these ligering symptoms come from the bug juice. As far as a positive ANA, the internet information states that there are many factors for a positive ANA. I do have cryo, maybe that is why it is positive? I will ask the Rheumy about that one too. I also had EBV when I was 28. Thanks again. ((((( Sue )))))

[BostonGirl]

Hi Susan;
        I am glad that your flare ups are a thing of the past. You are right, the Sam-E really didn't help me enough to justify the price. I had to take ridiculously high doses > 1000 mg. per day to notice just a bit of a difference. At those prices, it was not worth it. I am glad though, that it works so well for you.
Take care (((( Sue ))))

[BostonGirl]

Hello Jody;
          Thank you for your response. My whole body is aching, everywhere! LOL! My hands & arms are the worst though. I also tested positive for ANA > auto nuclear antibody.

My Rhuemy said could be lupus with all my joint pains. So, she ran several tests for lupus, came back negative for lupus. But I tested positive ANA again.

Did you test positive ANA? I think I read somehwere that is one of the tests to confirm AIH. I will be seeing her next week and will bring this up. Thanks again for the feedback. I think there's more going on than just post tx stuff. (((( Sue )))))

[LizzyBizzy]

Thank you all so much for making me feel welcome and taking time to reply. It is so much better reading about fellow sufferers treatment that is or isn't working.I have also looked at the sites you have passed on to me and found them very helpfull.I feel much better about going on to the Imuran now.  It will be lovely if some of the side effects of pred subside in future months. I hope you all enjoyed Halloween. Best wishes, Lizzy.

[BostonGirl]

Hi Susan;
         I am really glad when I see your name in the posts too! You always have good information to share, as well as a cheerful word. Besides, if your name is Susan, well quite frankly you've just got to be full of wisdom, right? LOL!

I try not to complain too much around here ( I save that for my husband ) Ha! Seriously though, I try to share experiences and encourage others on tx or contemplating tx. Some folks are shocked when they hear me say I do not have any regrets about my tx journey. I won't live my life in regrets. I knew all the risks and made an informed decision. I just never thought that I would be one of those, well one those stories, you know. Ha!

I went through some pretty tough times during tx. But, during that time my family really grew spiritually, especially my children. God has given them a special grace to endure. They sing, write, play piano, and play guitar. My tx brought on a whole new form of inspiration for original songs. Their music is improving every day. There is always a silver lining in our family, no matter what we go through; we become stronger with each storm. I thank my Jesus for that.

God Bless You Susan (((((( Sue )))))

[Tallblonde]

As you wrote about your children and their musical ability, I got this picture in my mind of the Von Trapp family from the "Sound of Music!"  How sweet!

As time goes on, I'm sure you'll come to realize that many other blessings resulted from your illness and your attempt at treatment.  Your kids are getting important lessons in courage, strength, grace and faith. They are being shaped in positive ways by this experience.  God indeed knows how to use pain and suffering to his glory.  

I really admire you, Sue.  You are a tremendous role model for all of us.

Hugs,
Susan

[BostonGirl]

Hello Susan;
            I do not need to wait for time to go by to realize just how blessed I am in my life. God's been good to me, so, so,  good to me. I have no room to complain ( but I do from time to time he-he ) And of course He lets me know everything's gonna be alright. I have that inner peace knowing He's in control, not me.

As for my girls, that is a very sweet thing for you to say. I need to remember how wonderful they are on those days when they are not so wonderful, or better yet, just down right little stinkers. They may sing like angels, but they can sure act like little you know whats. LOL!  

God Bless ((((((( Sue )))))))