Can you be misdiagnosed with autoimmune hepatitis?

hi tmphipps and welcome,
when liver enzymes are in the thousands, aih, acute liver toxicity are suspected. less common causes could be hep A or B. then you had a 5 year remission. im sure your GI checked all these possibilities. steroids are the go to drug for AIH flares. You will find out. Or it can make you feel worse, if misdiagnosed. one of our moderators has AIH. I will ask for her to follow up with you.

I have MS also a autoimmune disorder. so I also use steroids during flares. im energized while on them, then feel fatigued both physically and mentally, for4 or 5 days after..but when it works, the few days of blahs are worth it.. also, I reduce salt intake on steroids, because they can make you hold water.
best to you,

If it's not AIH, the steroids would make your alt/ast rise again. Steroids are not good for the liver, unless you have autoimmune(aih).

I would ask for a different dr.. A dr that you can't question comfortably, would get me upset. You do have a difficult type of hepatitis to diagnose. a hepatilogist would be a better option. They are the experts.

Drug induced hepatitis doesn't take a couple years to resolve. And the only positive hepatitis test you've had is ANA. Did your dr tell you if you have any liver damage? Hopefully your liver healed during your remission. Let me know what your told.

Thank for your reply. I made an appointment with another doctor. I have Kaiser and my pcp referred me to another GI Dr (at another location). I had asked for a hepatologist but maybe there isn't one within Kaiser here... My original GI called tonight because the pathologist didn't comment originally on the chronicity/scarring so my Dr asked about it. He was told there is some scarring but not extensive from what I understand..again he is difficult to understand and I don't feel very comfortable continually asking for clarification/explanation.

Tmphipps,

Sorry, I'm generally incognito but this year has been worse than usual. Anywho, yes, it could very well be AIH. And while it would be awesome if it could go back into "remission" - we generally call it being stable - bouncing back and forth with inflammation is actually pretty bad for your liver. I'd want a concrete response on whether or not you have scarring/cirrhosis. If you do, I wouldn't hesitate getting on the steroids and following that up with an immunosuppressant. Then they'd slowly wean you off the steroids.

Please really focus on getting to a hepatologist. Don't fear the 'roids as scary as they seem. They are a life saver and a life extender. On the plus side, since you do seem to hit lower levels, budesonide might be fine to start with. It's a steroid but it acts differently than prednisone. Less side effects!!!

I'd also like concrete answers on which antibodies were positive. As ppm guy said, if it is AIH, you'll have a response with the steroids and none without. your biopsy should've been the definitive test as that is considered the "gold standard" for AIH diagnosis. So if they aren't 100% sure from your biopsy....press the issue of testing you for PBC (Primary Biliary Cirrhosis) or PSC (Primary Sclerosing Cholangitis).

Shoot more questions my way...I'll see if I can figure out why my email link didn't work for ppm guy...

I was wondering if they tested more specific antibodies...ASMA (anti-smooth muscle), ALK-1 (anti-liver kidney), and less commonly; anti-soluble liver/liver pancreas antigen (anti-SLA/LP) or atypical perinuclear antineutrophil cytoplasmic antibodies (atypical pANCA).

Also, they can check for AMA antibodies that would show up if it's PBC.
So you're sure they said scarring and not fibrosis?

As per steroids, I had all the physical and mental side effects. The only one I didn't have was steroid induced diabetes. So hyperactivity, moon face, leg swelling, hump on upper back (that was awesome!), acne, back-ne, irritability, a little spontaneous rage, emotionality...good times, good times. I was on 40mg for 5 weeks though, then 30 for 4, 20 for 3 (I think) 10, for a couple... I cleaned the garage in the middle of the night and the freezer. Had I known, I would've used that sleeplessness more productively and painted. I was super sick when they diagnosed me so they hit me up hard. As I said, Budesonide has less side effects and my hepatologist said if I ever flare, they'll put me on that. I didn't get sicker than normal. My daughter was 8 at the time so the usual school germ magnet. My mom was diagnosed with lung cancer a couple of months after my diagnosis and I flew home to spend a couple of weeks with her and go to chemo appts and didn't get sick. I like to say my cracked out immune system had a good balance with the meds. It kept fighting off the bad but stopped trying to kill me I had started immunosuppressants the week after I started the steroids and after about a few months I actually piggy-backed two immunosuppressants waiting for the azathioprine to kick in (it takes two months and since I was so ill they had originally started me on CellCept).

I wouldn't worry about an ANA of 1:80...that's barely positive. Have they repeated that? Mine initially were either 1:640 or 1:1280 (I can't remember as I may be mixing them up with my daughter's, I'm pretty sure she had a 640 or maybe hers was a 1:320 and mine was the 640...and yet she hasn't been diagnosed with an autoimmune disease yet so fingers crossed ). I'd ask to have that repeated too.

And wait a min....I know you were tested for a bunch of things...was one of them CMV (cytomegalovirus)? Since you're a teacher, I wouldn't be surprised if you are positive. It causes jaundice...and other things. I contracted it after diagnosis so for me, it caused hemolytic anemia - it only lasted a couple of weeks but it can be nasty in the immunosuppressed.

They said your gallbladder is fine? Wondering if the "likely benign lesion" is anywhere near a bile duct and is restricting flow at all. Ever have pain in your right shoulder blade? Trouble with greasy foods?

Are you seeing a different doctor than the dictator?

That's a lot for now, I'll let you digest a minute

Hi tmphipps,
I was just catching up your thread. The difference between scarring and fibrosis, is scarring doesn't heal. Fibrosis can regenerate. I see where you stated, that your dr. Said you were at level 2. That would be fibrosis. Scarring would happen at late stage 4.

I'm on my phone
All my side effects whent away or started going away when I got down to 10mg of pred. I was on pred for a total of 22 months. Budesonie wasn't approved for use with AIH. It was primarily used for Crohn's. They started trying it since the side effects were less and are using it more and more as the resutls proved promising.
The other antibody tests are specific for AIH (although not all patients with AIH have positive antibody results). Except AMA, that's specific for PBC.
I'm hopeful new doc will be better. The virus that is associated with mono is Eppstein-Barr so for that point, and not that one alone, I would lose faith in your current doc. Your CMV is high. You may want to ask new doc if your liver levels could be due to that...and maybe also see an infectious disease doc. There is an anti viral for CMV (gancyclovir) but it isn't the greatest drug. So they may not pop you on that if they don't think the CMV is the culprit.
Also ask this new doctor, nay, demand that this new doctor refer you to a hepatologist. You should not be casually awaiting liver levels to climb for action. It is not good to keep your liver inflamed.
Oh...are you drinking any alcohol? Please do not drink ANY! And if you get a cold, take no cold medicine containing alcohol. There are some cough syrups that have zero. Alcohol is the worst thing for your liver especially when already inflamed.

I think that's good for now :) Oh, the shoulder blade and greasy food questions were concerning your gallbladder but if it's fine, don't worry.

Hi

I too have AIH - diagnosed in 1999. Antibodies in AIH can be complex (lets face it most things about AIH are complex!). I have never tested positive for ANA but do for SMA - but then so do lots of people without AIH. So it is like putting pieces of a jigsaw together. My first biopsy didnt even confirm my diagnosis although later ones plus the fact I have responded to medication did.Which is why if there is any doubt I would also advise seeing a hepatologist ideally one experienced in autoimmune liver diseases.

They usually do a huge work up initially to exclude viral causes. Indeed I am in a flare at the moment (which is most likely actually the start of PBC or PSC to add to the AIH but that is a different story!) and even though I have long standing AIH my hep did not assume it must be a flare but tested for many viruses - again. And we went through possible medication links.

In general people on immunosuppression do very well. I am a member of quite a few AIH Facebook groups and whilst some people do get a few more infections than before many of us don't. We have teachers, nurses, and others who work around kids, ill people who do fine and dont pick up infections.

Good luck and keep asking - I am in UK so apologies for any Brit speak you don't understand!

Ann

I did try it once - got very bored and it did absolutely nothing for my bloods or how I felt. So I stopped.

I honestly cant remember how long I tried it for. Usually I give things 3 months unless there are clear signs it isn't for me. Ann