Diagnosed with Autoimmune Hepatitis

[lindakoy]

Hi,
I was diagnosed with Sjogren's about 4-years ago and have been taking plaquenil since that diagnosis.  I've tolerated the medicine very well, and it seemed to be controlling the disease.  Just a little dryness of the mouth/eyes, but nothing too bad.  Also have a few joint pains, but again, nothing to complain about.

Since I was diagnosed with the Sjogren's my AST liver enzyme level has been slightly elevated (just 5-10 points above the normal max) while my ALT has been normal.  Recently my Rheumatalogist decided to to test for autoimmune hepatitis even though he did not think I had it (thought the elevation could be due to fatty liver).  Well, I just went to see him yesterday and he told me I have autoimmune hepatitis, (even though you need a liver biopsy to totally confirm the diagnosis).  The news blew me away, as I was not expecting it, and I have been an emotional mess since then, but trying to pull myself together to get information to make informed decisions. 

The usual course of treatment is Prednisone in conjunction with Imuran.  However, my Mother (who also has Sjogrens) has very bad osteoporosis, so I'm concerned that I have a predilection for it.  So, I asked my Doctor if I could avoid taking the steroids.  He said that we could do that, and I am currently only on 50 mg of Imuran and scheduled to go back in 3 weeks.  However, after educating myself a little more on autoimmune hepatitis, I'm wondering if this is the wrong course of action, and I should be on the Prednisone to give my self the best chance of knocking out this hepatitis.  I'm very worried about the progression of the disease, and am trying to weigh the options carefully.  I'm also worried about the Prednisone because I have high blood pressure already (taking norvasc and a water pill for that) and glaucoma, both of which I've read can be problems with Prednisone.  I'm wondering if anyone would have any opinions they could share? 

My Rheumatologist is very difficult to talk to, and I need to pull any information out of him by asking the right questions, he does not give me a lot of information from his side.  He is however, highly qualified, having both an MD and PhD.  My PCP on the other hand is great to talk to, and will give me almost too much information, but I'm not due back to see him until Sept. 

One other thing I'm wondering about is the value of a liver biopsy.  I asked the Doctor whether having information from a liver biopsy would change the course of treatment, and he didn't seem to think it would (I need to grill him more on this issue) and dropped it.  If it will help with treatment options, or if there is a possibility of the liver problem being caused by something else, I'd get it done.  But, I've heard that it is very painful, and I'm not sure it is worthwhile?

Any help anyone could provide would be greatly appreciated. 

Thanks
Linda

[Jozee]

What exactly is autoimmune hepatitis? I'm not familiar with it. Is it something you "get" from something or is it your own body creating it?

[Jozee]

Ok...so I had a brain fog moment and then realized I could just look it up myself. 

I had never heard of this before. Did you have any of the symptoms?

[lindakoy]

Here's a definition from Mayo Clinic:

Autoimmune hepatitis is inflammation in your liver that occurs when your body's immune system attacks your liver. Although the cause of autoimmune hepatitis isn't entirely clear, some diseases, toxins and drugs may trigger autoimmune hepatitis in susceptible people, especially women.

Untreated autoimmune hepatitis can lead to scarring of the liver (cirrhosis) and eventually to liver failure. When diagnosed and treated early, however, autoimmune hepatitis often can be controlled with drugs that suppress the immune system.

A liver transplant may be an option when autoimmune hepatitis doesn't respond to drug treatments or when liver disease is advanced.

It's due to the Sjogren's Syndrome, and apparently I hit the jackpot, as it is relativity rare.

[ScienceGuy]

Sjogren's and AIH for me too.

I was diagnosed with Sjogrens a couple months ago and diagnosed with autoimmune hepatitis just last week.  My first test of elevated liver enzymes was earlier this year, and have stayed elevated.  My liver biopsy was a few weeks ago and was not all that terrible an experience with only a couple days of soreness. My doctors would not treat the apparent AIH until it was confirmed with biopsy.

In my case, the doctor chose to go with another steroid.  While the usual treatment is prednisone+imuran, I was prescribed Entocort + Imuran.  Entocort is usually used to treat Crohn's.  The hope is that the more selective (not as systemic) steroid will do the job and allow me to avoid some of the consequences of prednisone. However, Entocort would be insanely expensive for me if my insurance wasn't covering it.   It might be worth asking about if you have the chance.

[lindakoy]

Thanks for your reply, Science Guy.  I hope that you are doing well with your drug treatment.

I was under the impression that any type of steroid could cause osteoporosis, but I will ask my Doctor if Entocort would be an option.  After my research, I'm feeling very uncomfortable with only treating this with Imuran.  If my liver enzymes have not gone down by the time I go back in 3-weeks, I think Im going to ask him to get on steroids.

[Surroundedbylove]

Hello all,

I posted on another thread but am hoping to get some response here from others with autoimmune hepatitis.  I have had Sjogren's for about 10 years and it appears to now to attacking my liver.  My liver enzymes are very elevated - five to seven times normal high.  The liver biopsy show autoimmune characteristics.

I have an appointment with a hepatologist (referred by my rheumy) - any suggestions for questions I should ask the hepatologist?

What have your treatment plans involved and if you don't mind sharing, what kind of liver enzyme elevation have you had?  How long does it take to get the liver enzymes back down in the normal range?

Thanks in advance.

SBL

[irish]

Linda, I wanted to tell you that prednisone is a drug that can cause some issues, however, there are times when it is needed and the benefits outweigh the side effects. I guess if it was me I would be going with the prednisone.

I have been on prednisone for 6 years and take 10 mgm every other day. Just to let you know that you can take up to 10 mgm every other day and not have much systemic side effects. Of course, you will be on higher dosages of the prednisone but as the Imuran kicks in and your numbers come down I would think that the prednisone could be lowered.

I also wonder if you should talk with your rheumy and ask him just what his role will be during this treatment. Will he be communicating with your GP?? I would assume that your GP will be in charge of any issues that may arise due to the Prednisone. He would be the one to monitor the BP and increase your drugs if necessary, etc.

I am sorry that you are having to deal with this but I am sure glad that your rheumy has been checking your liver function so that you became aware of it early. Now we all know why they check it all the time. Let us know how you are doing. Also, I would advise anyone who is needing to treat  AIH to ask for a second opinion if not happy with their rheumatologist's advice.

Also, isn't a person supposed to be referred to a gastrointestinal doc for the liver issues?? I would think that a biopsy would be necessary to rule out any other liver issues that might be occuring. Seems kind of strange to treat with the drugs without the biopsy. Just my opinion. Good luck. Irish

[ScienceGuy]

Hello Surrounded,

For my part, my liver enzymes were around 5X the top of the normal range. I have been on the entocort+imuran combo for about four months now. At the three month mark, there was a slight improvement in the numbers, and the liver doctor told me to keep on this plan for three more months before next visit. 

[Diane54]

I was diagnosed about 5 years ago with AIH by a liver biopsy. My liver doctor said that as of now he will not treat me because the predisone side effects are worse than my disease right now. I am on Plaquenil for my SS and it seems to help my liver enzymes because right now they are in the "normal" range. I would say as scary as a liver biopsy is, I would go for it because that way you can see if you are in any stage of cirhorsis. ( BTW The thought of the biopsy was worse than the actuall biopsy ) I have been told however by my liver doctor when I went for a check up before starting the Plaquenil that there were other options than the predisone if I ever needed to start on meds.

By the way...you will never "knock out the hepatitus"....this is autoimmune hepatitis and it is much different than the other hepatitis.

[Surroundedbylove]

Question for those with AIH and SJS:  pending some additional testing to rule out some odd ball liver diseases my rheumatologist and hepatologist will confer and they want to start me on immunosuppressants ASAP.  I understand that autoimmune hepatitis is a chronic disease (my liver enzymes have been high and climbing rapidly for over 9 months now).  I can't tolerate prednisone (tried it and my blood pressure goes uncontrollably high and I get the aggresive rage like personality as well as migraines and glaucoma runs in my family).  Do any of you know the different drugs they might consider?  I want to do some research in advance of the follow-up appointments.

Also, are there any discussion boards like this one but geared to AIH? 

Finally - I've heard some people say that you need immunosuppressants for the rest of your life, but with some breaks now and then.  Does this sound right to you?

My situation might be a little unusual in that my immune system may be complicated after chemotherapy.  The hepatologist said that they see problems like this in some patients after chemo and after antiretroviral drugs (like in HIV patients).

SBL

[irish]

You might want to try doing a search using the words  hepatitis, autoimmune, discussion forums, etc in many different ways. You will want a discussion forum and once you find that you may find that there will be a topic for autoimmune hepatitis.

also, once you find a forum you will notice that there are a lot of ads on the sides for other links that are similar.

There are many drugs that are used for autoimmune diseases that you may be able to use. However, you will have to use meds that are more "liver friendly" or metabolized in such a way that your liver won't be compromised. There is the methotrexate, imuran, cellcept, cyclosporin and many newer drugs. I would hope that you have a liver specialist who can guide you through this. Good luck. Irish