Hello!

Hi Kate!

For starters, ask about a biopsy!  If your numbers have normalised from being as high as they were, I wonder if it is AIH or maybe it was drug-induced hep?  Were you taking Tylenol or other pain meds?  Any antibiotics that you aren't on anymore?  I'm guessing the GP who diagnosed you did an ANA test?  Other than the ultrasound, what did they do to diagnose you with AIH?  Or maybe you have CMV or some other seemingly innocuous virus that caused trouble?  In any case, definitely ask about a biopsy.  That is the "gold standard" for diagnosis.  Not everyone has changes in their antibodies but there are specific cellular changes in the liver to differentiate it from other liver diseases...although I don't know how the tissue would look if there is no current inflammation going on...seeing as it's not a true liver disease but an autoimmune disease.  So with no current inflammation, there may not be any changes in the liver tissue on biopsy right now.  You should ask about that too!  At this point, you want to be absolutely sure what the diagnosis is to know best treatment options.

If the hepatologist is convinced it's AIH, then ask about treatment or if he/she would want to play the wait and see game to see if your levels elevate again.  He/she may be comfortable with just starting you on an immunosuppressant and bypassing the prednisone (that's used for inflammation which you probably don't have since your LFTs are normal )

Bring a notepad with you to write questions and answers or anything the hep says that you'll want to remember later.  It's overwhelming initially then you just go with the flow.

So the questions:

-Have you had ANA, ASMA, anti-LKM-1, maybe anti LSA (I dont' think I had that one done but my ASMA was positive - not initially - and my ANA had been positive for years prior to diagnosis)?

-Will you have a biopsy?

-how frequently you should go in for blood tests...the docs are all diff but most of us go in every 3 months for monitoring

-If it's AIH and they put you on pred, you should have a baseline bone density scan and ask about multi vitamins and calcium + Vit. D supplements.  If they aren't putting you on pred, then which immunosuppressant.  If it's Imuran (usually 1st choice), you can ask if they'll do the TPMT test to see if you can tolerate it before even starting...I never had it done, just switched to it once stable on pred and CellCept.

-Annual abdominal US

I think that's long enough!  Gotta start making some pretty graphs before my boss kicks my keester!

You are not alone though so please ask whatever you need to ask!

Good luck with the new hepatologist!  It sounds like he is a good one and he's certainly convenient for you.  Consider yourself lucky--some places in Canada have NO hepatologists.  Let us know your impressions after your appt.

I knew that Dany would be able to give you a lot of info.  That AIH related info just boggles my mind.  But we know best what we have personal experience with...and in Dany's case, also a scientific background.

Hugs,

Conni

Thanks Connie!!!
I will definitely will keep everyone posted! and I am VERY appreciative of Dany's knowledge in all of this... I was very scared thinking I was alone, until I found all of you!!

Thanks Kimlp2!! I am finding that as well!!

~Kate

Hey Bate!

I'll be thinking of you!  Hope it all goes well!  Remember...it could always be worse and out of a bunch of diseases, AIH isn't really that horrible.

UPDATE:
I met my hepatologist in August, and after going over my lab work and looking me over (my jaundice and swelling had subsided by the time I got the appointment) the hepatologist's assistant pretty much looked at me like I was full of crap and rolled his eyes at my assumption that I had AIH (the doctors were not sure what was going on at this point, but I was 95% sure it was AIH)
The hepatologist came into the room and basically said, you're not sick so go away and call your GP "IF" anything happens
I felt so frustrated that I wasn't getting answers, but relieved that the doctors didn't seem worried about what was going on...

Then near the middle of October I noticed I was getting swollen and pee was darkening and I could tell that my energy was draining. I called my GP and got an appointment for the next day. The GP blanched my skin and noticed I was becoming jaundiced again and sent me for blood work and an ultrasound.
I got in for the ultrasound the next business day and happened to have the same ultrasound tech that I had had in the spring, and he happened to remember me. He noticed that I was quite swollen and got some good pictures of my liver, gull bladder, kidneys, pancreas, spleen and ducts around the stomach. At the end he said that he did see "something" but he'd have to confirm with my GP what (if anything) it was and get back to me.

I had the ultrasound on a Monday and on Tuesday I got a call from my GP saying that the hepatologist will be phoning me shortly to discuss what's going on. He phoned me the next day (Wednesday) to say that they didn't like what the ultrasound showed and that my blood levels were high (ALT - 1095, Total Bilirubin - 132, AST - 1392)
The hepatologist then said that the would be booking me for a biopsy for that Friday (2 days from the phone call) so I frantically got blood work, a chest x-ray and an EKG done at the hospital.

Friday I went for my biopsy and they said that they were going to do it trans-jugularly because of my bilirubin being so high, if they did the biopsy the regular way (with the needle going in the abdomen) that would rupture the liver capsule and I could die from sepsis. The biopsy went well and they took 5 samples from my liver. I recovered well and waited for the results. (I now have a teeny tiny scar on my neck that should fade to nothing with time)

5 days after the biopsy I received a call from my GP saying that they had the results of the biopsy and that it was AIH. The hepatologist phoned me shortly after that to discuss treatment options and he started me on Prednisone and Immuran. I started at 30mg pred and 50mg Immuran. After a week they dropped the pred down to 20mg and then now I'm on 15mg.

I see my hepatologist again tomorrow for a follow up appointment. I'm not sure what to expect. Is there anything I should be asking him??

I am so grateful for this community! Thank you so much for being there for me in this interesting time in my life!!

~Kate

Thanks Carol!

Thanks for your reply Dany!

Yes! I go for blood work twice a week, and my numbers have been coming down nicely. My jaundice has cleared up and my energy has multiplied exponentially.

~Kate

David...that was in July first thing in the morning when I'd just gotten to work.  Today, I was trying to nip out early!  I do get a lot of HW checking done from work!  Not for long...got laid off and my last day is Dec 2.  Hopefully I find something soon though.

Thanks so much Dany!!

I had blood drawn this morning, and I know they get my results the same day. So he should have accurate numbers for my appointment tomorrow.
I wrote down all the questions you gave me, so hopefully I get some answers!!!

I'll keep you all updated as to how it goes!!!

~Kate

Kate,

I was reading back on the older posts to refresh my memory.  I'm having trouble understanding why the hepatologist had dismissed your previous AIH diagnosis.  I would ask him how familiar he is with the disease.  Also, do you have a copy of your biopsy report?  It is your legal right to have copies of all your medical tests results.  Did he ever say anything about how much damage you had?

Kate,

Scarring = cirrhosis.  Some cirrhosis for AIHers isn't uncommon.  It's not preferred, obviously but as long as you keep the rest of your liver healthy and stop your body from attacking it, the better.  So I would be diligent in making sure your LFTs are normal before attempting any further pred decreases.  If they aren't normal or are fluctuating, I'd suggest waiting to your hepatologist.  You are your own advocate...he isn't living with AIH, you are.  So just as his DB assistant should have listened, you have every right to a 2nd opinion if you start to think they are simply just walking you through a pred wean.  There are still many docs who don't have a clear idea of what AIH is....I am super impressed with your GP, however, she should have ordered the biopsy and not written it off when the jaundice cleared.  Hind sight is 20-20 though.  But your heps office should educate their folks about what AIH is, so many still chalk it up to a viral hep.

When did you start the pred? 

Good luck today!!!

My appointment went really well!!! The specialist was great and lucky for me the DB assistant was NOT there!! :D

He said the long term plan over the next several months is to wean me off of the Pred completely and to increase the Imuran so that eventually (within a year or so) I will only take the Imuran, and the pred would only be used if a major flare up occurred.

I asked him all the questions Dany gave me and he said I probably should start taking a calcium/Vit D, so I'll buy that today. He seems really hopeful that I should be able to get back to my normal life and that this will be something that I deal with but it shouldn't be controlling me.

Thank you so much for all your positive thoughts and comments! They are very much appreciated!

~Kate

Thanks Angie1953!!