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trd
New Member


Date Joined Apr 2009
Total Posts : 13
   Posted 12/17/2009 5:45 PM (GMT -7)   
Hey,
I have never posted to this site before, but I am facing the possible diagnosis of AIH and had a few questions. I also am pending a diagnosis of Still's disease and have been on Kineret and Ilaris, also methotrexate but for only 10 mg a week for three weeks. Anyhow, my liver enzymes have been up off and on now since September. The rheumatologist sent me to the gastroenterologist and he is not sure if it is due to meds, Still's disease or if it is AIH.
 
My question with AIH can symptoms linger over a year before liver enzymes go up? I may be facing a liver biopsy and just wondered if anyone had anything to say about having that?
 
Thanks,
tday

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 12/17/2009 6:32 PM (GMT -7)   
TRD, I just wanted to welcome you to the forum.  There are several people on this site with AIH, so perhaps they can answer your question.  How elevated have your enzymes been?  There are other indications of AIH, including an elevated IgG and ANA (antinuclear antibody.)  Did the gastroenterologist do these tests?

hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


trd
New Member


Date Joined Apr 2009
Total Posts : 13
   Posted 12/18/2009 6:38 AM (GMT -7)   
The latest numbers are AST 130, ALT 178, GGT 280, and Iron 167. ANA in August was positive at 1:640. I have also recently been diagnosed with Still's disease (like RA and lupus together). IgG was normal, but IgM was a little low x2 at 43 and 53 consecutively. They first were elevated in September x3, normal in October and back up now. I took Methotrexate 10 mg every week for only three weeks in September? Go figure. Still waiting to here if I am going to have to have a liver biopsy or not?

trd

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 12/18/2009 10:12 AM (GMT -7)   

Those are pretty high elevations of liver enzymes, but not exceedingly.  People with one autoimmune disease (like Still's) tend to develop others, as well.  I suppose there is really no way to know until further tests are done, including biopsy.

Hugs,

Connie


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


DGinSD
Forum Moderator


Date Joined Apr 2007
Total Posts : 839
   Posted 12/21/2009 1:04 PM (GMT -7)   

trd,

I have AIH.  I don't know when my levels started to go up and I blew off most of the symptoms I had prior to having bloods looked at (after I became jaundiced)...so I can't answer that question.  I had nausea, vomitting and really bad chills the week prior to going to the doc.  It took 2 weeks with labs every other day to diagnose but confirmation of diagnosis was only after biopsy.  Don't fear the biopsy, it sounds worse than it actually is.  I had mine via the transjugular route as my prothrombin time was way off so I wasn't clotting.  My ALT was 848, AST was 748 and bilirubin went from 9 (1st blood after jaundice) to 23.3 the day before starting pred and having biopsy.  I have known others on the Yahoo group who have had their ALT/AST in the 1000's range.  I really don't know what the correlation between level and damage is and it seems to differ with everyone.  I had severe damage but no cirrhosis.  I responded very well to treatment and am in remission and only on Imuran.  I've been off pred for a year.  I was diagnosed in Jan of '07.

http://medicine.ucsf.edu/education/resed/Chiefs_cover_sheets/autoimmune_hepatitis.pdf

This is a quick link to understand the differences between type I, II and III AIH.  Also, look into Melissa Palmer's book.  http://www.amazon.com/gp/product/B001BC8E0Y/ref=pd_lpo_k2_dp_sr_1?pf_rd_p=486539851&pf_rd_s=lpo-top-stripe-1&pf_rd_t=201&pf_rd_i=0895299224&pf_rd_m=ATVPDKIKX0DER&pf_rd_r=1KHQ2WN0HMX35MMDE8E5

Lots of good info under the AIH section.

Let us know how it's going and what they say about the biopsy (you'll likely have the percutaneous one but I heard that one isn't so bad either).


Dany
 
Diagnosed with AIH January 2007,
CMV (cytomegalovirus) June 2008
meds: Azathioprine 100mg
 
 


trd
New Member


Date Joined Apr 2009
Total Posts : 13
   Posted 12/21/2009 3:48 PM (GMT -7)   
Wow your numbers were really high. Sorry to hear you have had such a hard time. Hope things are better for you now. I am having nausea, diarrhea, fever, chills as well. I found out today though that my last liver function panel was completely normal. Now isn't that strange. I am thrilled the numbers are down, but why I am feeling so sick. I just wonder if this can happen with AIH, having your numbers go up and down? 
 
Thanks for the support
 
trd

DGinSD
Forum Moderator


Date Joined Apr 2007
Total Posts : 839
   Posted 12/21/2009 4:24 PM (GMT -7)   

trd,

Sorry if I made it sound bad...I'm actually pretty lucky.  It was only super scary for a couple of weeks while they were trying to sort out what was wrong.  I am lucky as I responded to treatment super quickly, granted I had sooooo many of the steroid side effects but they all go away when the dosage lowers, I don't have any fatigue or joint pain.  There are some others who are on disability from their AIH as their fatigue, joint pain and/or increased affinity for acquiring flus seems higher.  I think I have had one really bad cold since all this started...knock on wood as flu season is starting cool

Anyway, you can have fluctuating levels with mild AIH.  They don't always treat mild AIH either.  Do be sure you see a hepatologist if you can and not just a GI doc.  Your rheumy sent you to a gastro but a hepatologist has extra training specifically in liver diseases.

Could the symptoms you are having be from the Still's?  I was looking online about it and some of those are symptoms...


Dany
 
Diagnosed with AIH January 2007,
CMV (cytomegalovirus) June 2008
meds: Azathioprine 100mg
 
 


trd
New Member


Date Joined Apr 2009
Total Posts : 13
   Posted 12/21/2009 6:47 PM (GMT -7)   
Dany
 
I am glad it is not as bad as it seems. I am glad it seems you are functioning well. The elevatd LFTs could be from Still's and maybe that is what it is. Who knows. This has been going on since 06/2008 and I have been out of work over four months now so who knows. But we will figure it all out someday. In the meantime, we just have to make the best of what comes our way and that is just what I am trying to do. Thanks for all the info.
 
trd
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