1 year update. Auto hepatitis?

[emmac13]

Another update. Eddie has been diagnoised for almost a year now. He has been on Imuran for 10 months. He has grown from 5'1" to 5'7". His weight has raised from 113lbs. to 136lbs. He has had no digestive issues. One issue we do have is his AST/ALT have been consistantly high. Recently a ANA test has ran and high. So now he may need a liver biopsy to see if it is autoimmune hepatitis. Bummed. Anyone had these results or auto hepatitis?

 

[Clash]

Sorry no experience here. How did they rule out that Imuran wasn't causing the high levels? We're the levels high before starting Imuran? I'm sure other will be along shortly with their experiences. Hugs!

 

[emmac13]

I looked back on his tests. The first 5 test within first 2 months were in range. It was at 10 weeks his AST was elevated. Then they went down for one test. And has been up the last 4 months. She did lower his Imuran two months ago thinking it may be the cause. But it hs not helped.

 

[Clash]

Hmmm... I know some have had to come off Imuran all together to see a difference in liver tests but with the ANA high I don't know how that relates. I'm going to tag my little penguin and Dusty as they may be more familiar. Hopefully they'll see the tag and stop by!

 

[DanceMom]

My daughter had to stop 6-mp due to liver toxicity. That was some time ago and my memory is terrible, but it seems that she was on it for 6-8 weeks (maybe a little longer?) before levels started increasing out of control. She is now on Privigen (IVIG) and it does cause her liver numbers to rise but then they do return to normal. Stopping the medication and repeating labs would determine if the Imuran was to blame.

 

[DustyKat]

Thanks Clash.

No experience with that at our end emmac13. Auto immune hepatitis is an extra intestinal manifestation of IBD and although I haven’t found any overt references to it running independently of disease activity I do think it does and that would fit with the fact that your son appears to be otherwise well IBD wise.

There is a very good article posted in the Books, Multimedia, Research and News forum that has contained within it Auto Immune Hepatitis and you can find here:

Hepatobiliary Associations with Inflammatory Bowel Disease

If there is an issue with auto immune hepatitis then the treatment does involve the use of the same drugs used to treat IBD. I personally would seek the opinion of either a hepatologist or a GI that has a special interest in liver disease because disease that runs independently of intestinal inflammation means you are essentially dealing with 2 separate entities. Plus, due to the overlap of the drugs in both conditions you need someone that fully understands the relationship of how these drugs interact with the liver and what are acceptable liver enzymes when treating the disease even though those levels may fall out of the realm of normal.

Good luck dad, I hope all goes well. :ghug:

Dusty. xxx

 

[DustyKat]

I meant to add that is probably worthwhile seeking the opinion of a hepatologist or GI with liver interest regardless of the hepatitis outcome so as to better understand the liver and how your son’s liver responds to the drugs used to treat IBD.

Dusty. xxx

 

[my little penguin]

Ds had to stop 6-mp due to high liver numbers
Never had any ANA tests

Has the doc tried to stop the med to see if the numbers drop ???

 

[emmac13]

Thanks everyone. She said to get more bloods done Monday. Then mentioned liver biopsy. But I am worried about the biopsy. I would rather stop his meds. But I do like how his health is better. So I have missed feelings.

 

[crohnsinct]

My mom has auto immune hepatitis. They use Imuran to treat her. It is a tough one. There is also a pretty well established network of people who have chosen to not use meds but rather supplements and such. They have used the protocol all while seeing a doc and being monitored by the docs so should something arise and they need to jump on meds they can. The woman who basically pioneered this wrote a book. I believe the title is "Curing Courtney". Courtney is her daughter.

 

[xmdmom]

How high have the liver function tests been? Are they slightly elevated or more than twice the upper range of normal? I've read in a couple of places that it is when LFTS are more than twice normal that doctors stop or decrease imuran (see quote below). I don't know if this is universally true; the information was about ibd but not specifically about children.

http://www.healio.com/gastroenterol...6-a430-d735ef89a8d7}/how-do-you-monitor-patie

• What CBC and LFT blood results do you aim for?

The aim of therapy is immunomodulation without immunosuppression, and I aim for a total white cell count of greater than 3.5 x 109/L with a lymphocyte count greater than 1.0 x 109/L, or occasionally slightly lower. Asymptomatic elevations of hepatic transaminases only require dose
reduction once they reach more than twice the upper limit of normal.

I can definitely understand your concern. Getting a second opinion seems reasonable.

 

[Sascot]

It seems strange they kept him on the med if ALT was high. We were taken off Aza when they saw my sons liver struggling. Can your son change to something else like methotrexate?

 

[emmac13]

AST 64, ALT 67
ANA 1.9 > 1.5 is H
Histone 3.1 standard is <1

Those were the only three high test.

The following test were NEG. which are Wilson, Celiac, and Hepatitis test.
TRANSGLUTAMINASE IGA
GLIADIN (DEAMINATED) ABS
CERULOPLASMIN BLD
LKM AB
SMOOTH MUSCLE AB PNL SCRN
SMITH IGG AB

My research shows a high Histone test is most likely drug induced Lupus.

 

[my little penguin]

Ds alt and ast were in the 90's
Never did the other tests
Lower 6-mp to 1/4 dose and adding allopurinol dropped the numbers to normal

 

[DanceMom]

My daughter's AST was 92 and ALT was 327 when we stopped 6-mp. Her numbers started dropping immediately after stopping the medication but took a few months to return to normal.

 

[xmdmom]

In terms of the AST and ALT, I found this info:

Normal Levels of AST and ALT

Normal levels of AST and ALT may slightly vary depending on the individual laboratory's reference values. Typically the range for normal AST is reported between 10 to 40 units per liter and ALT between 7 to 56 units per liter.

Mild elevations are generally considered to be 2-3 times higher than the normal range. In some conditions, these enzymes can be severely elevated, in the 1000s range.

http://www.emedicinehealth.com/liver_blood_tests/page3_em.htm

I don't know anything about the other tests you listed.

 

[emmac13]

With the grace of god his AST and ALT levels from blood tests yesterday returned normal range today before we met with GI. She believes the dose was to high. We dropped it 8 weeks ago. She believed it took that long to drop in his body. So no Autoimmune Hepatitis for now.

 

[DustyKat]

This is so good to hear emmac13.

I hope all stays settled for your lad, bless him. :heart: Good luck!

Dusty. xxx