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Auto-immune hepatitis - newly diagnosed, need advise

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Posted 7/17/2011 9:24 PM (GMT 0)
Hi all! Just hoping somebody might know things about it from own experience and help me clear things ? confused

I am recently diagnosed with AIH. Had gallbladder stones attack (mad pain between shoulders) and went to A&E where my blood showed GTT - 500, ALT - 450 so they just told me not to drink (which i don't at all). When I saw my gastro doc week after he did more tests which came back bit better liver tests, though still in 100 up and with high ANA and ASMA and anti DNA (anti-smooth muscle antibody) positive.
I since had my gallbladder removed (about month and a half ago) and at the same time I was diagnosed with Lupus and they put me on Plaquenil. Doc only recommended taking milk thistle for liver and nothing else? Last blood test did show that enzymes were just above the norm (40 something)

Last couple of weeks pain under my right ribs was back, so is in between my shoulder blades (very small one, more like something is stuck there, or tight). Also my stomach seems to be "not happy" all the time, any food consumed really hurts! I read a bit about the AIH and feel a bit worried, all website seem to say that you should be on steroids as soon as you're diagnosed, or some other medicine, and he just sent me home with plaquenil for Lupus?

Is this normal, do they actually wait until it gets really bad? Or should I call him again and ask for some other medicine?
Its all bit scary :(
Posted 7/17/2011 9:52 PM (GMT 0)

Tigra, welcome to the forum!  Dany is our resident expert on AIH and related liver disease.  I will let her know you have posted and I'm sure she will respond at the first opportunity.  Meanwhile, I have copied part of a recent post of hers which may answer some of your questions.  I'm also curious if you saw a hepatologist or a GP?  I know the medical system over the pond is different, so that may be something you will have to insist on or get a referral for. 

This from Dany:

"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 turn )

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"

Hugs,

Connie

Posted 7/17/2011 11:40 PM (GMT 0)
Tigra,

Welcome!  Did you ask why they gave you both a diagnosis of AIH and Lupus?  You should definitely be seeing a hepatologist for the AIH and if you have Lupus, a rheumatologist.  Have you had a liver biopsy for confirmation of AIH?  Milk Thistle is not a medication.  Some think it works, others think it's more a placebo type effect but won't hurt so ok to use.  More studies are being conducted but I'm VERY surprised they diagnosed you with AIH and didn't start you on prednisone.  How often are you going for blood tests?  It's one thing if you have a mild form of AIH to not be prescribed prednisone....there are a few AIHers who are solely monitored until higher levels are sustained but I would want to have my liver biopsied to confirm and see what kind of damage you have.  So I think you should definitely talk to your gastro about these issues.  AIH is a serious disease.  It can be treated and controlled but shouldn't be taken lightly.  You want to avoid cirrhosis and that means knowing what you're dealing with and treating it so no further damage occurs.

The pain after eating could be a result of your gall bladder removal.  You do need to call regarding that as well.  So as Connie posted one of my other posts, please make a list of questions and call your doc or schedule another appointment to go over everything.  If you are uncomfortable with this doctor, see about getting a 2nd opinion from another.

I look forward to hearing more from you and hope I can help any way I can.

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