Possible AIH - In Need of Support

This post was locked in error.

I have cut and pasted the previous posts into this introductory post as I do not have the authority to unlock a post..

Please continue, cookiechick..and please know I have no idea how it got locked!!!

I'm sorry anyway...it wasn't very welcoming...

Mama Lama

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cookiechick
New Member




I am going through the process to try and determine what is wrong with my liver. A routine blood test showed that my ALT was 208 and my AST was 153. My liver ultrasound was "unremarkable" and my Hep A, B and C results were negative. I am still awaiting the results of my autoimmune tests, but right now, I cant imagine it being anything other than AIH.



I am terrified by this possibility and have no idea how this could have happened since I have never had any problems with my liver or other autoimmune issue. And I had no symptoms at all until the blood tests came back abnormal. The only major life changing event was that I just gave birth to triplets three months ago, and I had my blood monitored throughout that pregnancy. Everything was normal until just now with this big spike, so I'm wondering if the pregnancy was my trigger.



I'm just looking to see if anyone here also has AIH and if the disease can be managed and controlled long term. I want to be here as long as possible for my new babies.

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MamaLama
Forum Moderator

Hi cookiechick, Welcome to our world... We are patients and loved ones of those affected by various types of liver disease.

I am caregiver to my 64 years partner who is 2+ years post liver transplant who still has Hep C. He is doing pretty well. This forum was a life saver for me...I learned 10 times more here than I did at his appointments.

One of our Moderators, Dany is an AIH patient herself and I'll send her a quick email to let her know you have posted....she is better at the specific lingo for AIH that I am. We have another member, Ann, from the UK who is a great resource. I hope she posts in today as well.

While your liver functions are elevated, they are not nearly as high as some AIH folks. The real test will be how your auto immune test show up. And even then, some folks have mixed test results as they can fluctuate during more and less active times.

It is not unusual for a "flare up" after childbirth. Dany will explain all that including how to cope with side effects of long term medication for AIH if it comes to that.

Again, it is great to see you here. When do you think you'll get the next tests back?

Hugs,
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MamaLama
Forum moderator - Hepatitis


Partner received liver transplant May 1, 2011, Jackson Memorial, Miami, FL

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arneeb
Veteran Member


Well hey there CC. Calm down until you get the full picture. Congratulations on the babies. Wow triplets!! Our people familiar with AIH will give you more information later. You came to the right place. Take a deep breath.


Sandia
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There is no pit so deep that He is not deeper still... Corrie Ten Boom

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AIHer
Regular Member


Hi cookiechick

I think you may be jumping the gun a bit by assuming it is AIH. Raised LFTs can be caused by a range of things often temporary.

The autoimmune tests should show more.

But if it is AIH it is a very controllable disease for most people. But it can and usually does strike out of the blue. Basically you have to have a genetic predisposition and then something triggers it. That trigger can be anything or everything - they really aren't too sure!

The treatment starts with steroids then an immunosuppressant is added in that allows the steroid to be reduced or in some people withdrawn completely. It can take a bit of time to find the right meds and doses but once that is done people with AIH can expect to lead a pretty if not totally normal life.

I have had AIH for 14 years now and have to say I live a normal life just swallowing my tablets everyday day and seeing my hep twice a year.

Do let us know if you have any further questions but there isn't a need to panic. I won't tell you not to worry but do try and keep things in perspective. AIH is eminently treatable.

Ann
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cookie Chick
New Member


Thank you all for your responses. I know I have a tendency to get ahead of myself. It's so hard for me not to. I should be getting the results back from my autoimmune tests by Monday, and I will provide an update when I do. If it is shown that I have AIH, then I am glad that I found this forum.

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DGinSD
Forum Moderator


cookieChick!

I agree with the others...don't stress out too much. It's easier said than done and on the very plus side, if it is AIH, it seems to be super duper early! That is always better for any disease. Stress is no one's friend and even less of a friend to those with autoimmune issues. It can trigger flares.

Does anyone in your family have an autoimmune disorder? Generally, one has a predisposition to autoimmunity issues. You may not have another family member, that you know of, and you may be the first to have developed one. Sometimes people figure out their trigger. In any case, if you are diagnosed with AIH, the trigger doesn't matter.

When will you be having follow up labs done to check your levels again? You should be having a repeat blood test a couple of weeks to a month following the first elevated tests.

If you search my name or Ann's, you'll see lots of old posts with tons of info. Ask any questions you have. The only thing I would advise you to change in your regular behavior is to not consume alcohol until you know what's going on.

And Welcome to HW smilewinkgrin
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Dany
Co-Moderator - Hepatitis
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AIH Jan 2007
CMV June 2008
Raynaud's February 2010
Meds: Azathioprine 100mg & Ursodiol 250mg BID

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Muddypaws
New Member

I can relate. I have yearly physicals so I believe onset is in that time frame. I took prilosec for gerd, I was going to a boot camp, trying to eat better. I started to feel full quickly, nauseas, went to PCP sept 2013 who referred to GI, blood work showedhigh levels 200 to 300s, higher at some point. I had an ultrasound that said I had a fatty liver (but this changed to not having a fatty liver after liver biopsy), an upper endoscopy that was normal and GI doc said I have NERD and not GERD, all the blood tests ruled out hep a, b, c and all other conditions, doc said I was an outlier, and said to come back in 3 months. My PCP did not agree and I had a liver biopsy that was "unspecific" but looked most like autoimmune hepatitis although I did not have the major markers, so I waited a month after the biopsy for more blood work with no significant improvement and started on 40mg of prednisone, but had changes in vision and other side effects so now on 50mg imuran and 20mg prednisone. I worry about the vision although it has improved but not back to where it was, I plan to ask my gi at appt next week about these things.

I too worry if this is treatable I want to see my daughter grow up, she's almost 6.

I overall feel better and I think im dealing more with med side effects but I am so fatigued in the mornings after taking the meds.

seems like everyone's condition is unique but know I have the same, worries and concerns. I'm trying to keep a positive attitude, I think it helps, mentally and mentally will help physically.

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Hi cookieChick

Glad you came back. There were several technical glitches with the site in the last month at the server level. Some regular posters were blocked entirely and my Mod privileges disappeared for a while. All that is settled--I hope.

Gosh. Triplets. I cannot imagine. I have what is fondly called Irish twins--very close. I can't imagine multiples. I hope you have some help and a supportive spouse. No wonder you have back pain! Even carrying those car seats in and out is a wt training session in my book.

AIH diagnoses are difficult as levels can go up and down. I'm glad your doc is being cautious and thorough.

Hoping you are getting some rest between feedings and diaper changes!!!

Hugs,

Carol

Oh, and I forgot to mention my partner had a child in between my two and had full custody. They both joined our family with his daughter was 4... But my post makes it seem like they are little now...at the moment they are 38, 38.5 and 39! We have 6 grandchildren now 7-14 years of age. Our joy.

First time on this site and I am so happy to find it! Diagnosed AIH about 8 weeks ago. Celiac 6 years ago managed very well on my diet.
I am scarred to death with the AIH. So many questions.... like, what will my life look like moving forward? Will I have a normal life span (47 yrs old now). I keep going to "that dark place" in my mind and no one to talk to! Was extremely active prior to getting sick then ultimately diagnosed. Enzymes (ALT & AST) are over 1800 each. Started 40 mg Prednisone 7 days ago.
Happy to find you and anything you have to offer in the form of advice, hope, experience will be greatly appreciated.

Jen

Welcome to the forum. We have several active AIHer on board this winter. I send an email so they are sure to post in

You have added to someone else's post thread.

You will get the most feedback if you start your own thread and cLl it something unique like; Learning to Live with AIH.

My partner is post transplant with Hep C recurring. IMHO expert on AIH other than to know diagnosis can be elusive. PrednSone is the first go to intervention during a flare up and then they ease you down onto some easier to tolerate meds.

I'm sure you will have many questions for Dany and Ann.

We have a lot of information and links at the top of this forum in the resources folder. Peek at them.

And just above the members post is a Search button. Putin any key word and old posts on that topic are sorted for you. Look around.

Hugs

Hi Jen!
Welcome to HW and AIH.
First thing, try not to be scared to death. If you respond well to medication, you will have the same odds of a normal life expectancy as any other human out there:)
On a day-to-day basis, celiac is probably harder to deal with as far as diet management. As Ann said, try to keep a good assortment of healthy treats around. Pred gives you the munchies and can cause a lot of water retention. I started on 40mg as well. I had lots of the physical side effects that come along with it. I was started on CellCept (mycophenolate) a week after I started pred then switched to aza a couple months later. My hep had wanted to get me under control as fast as possible and aza takes ~2 months to kick in (that's why the CellCept start).
Have you had a liver biopsy yet?
I don't want to overwhelm you either so ask away on the questions, don't be shy as all the questions you have, I'm sure some else has too:)
You can search for my name or Ann's and that'll pull up old threads.

Jennifer,
You're posting in the right thread; yours. Multiple postings are confusing. This way, anyone can follow what's going on with you and any replies to you.

Happy New Year!

So I'm still unsure of what is going on, but I did get follow-up blood work back yesterday and now my ALT is down to 77 from a high of 256 three weeks ago, my AST is 55 (down from 113) and my ALP is 90 (down from 186).  So it appears after a steady 3 month rise in those numbers, they all came down rather suddenly.  My GGT, however, is high at 120 (and since this is the first time it was tested, I don't know if it is rising or decreasing - and of course, I haven't had any alcohol at all in the past month). My GI doesn't think a biopsy at this time is necessary.  She is speculating that I might have had some sort of fatty liver of pregnancy which is resolving and wants to repeate blood in a month.  I'm not as sure as my numbers only started going up after I delivered, the GGT is still high and I did have a positive ANA.

Anyway, being the uber-thourough person that I am, I scheduled a consultation with a hepatologist at Mt. Sinai in NY (I understand they have a good liver center) for a second opinion next week.  If this is resolving, then great, but if not, I want to get to the bottom of it as soon as possible.

-cookiechick