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AIH Auto Immune Hepatitis - Really scared!!

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Posted 9/22/2014 9:55 PM (GMT 0)

More potentially bad news!!!

Just got blood test results which would apear to show I have AIH (autoimmune hepatitis type 1) in addition to UC.  Positive ANA and high Actin (smooth muscle) AB (IGG).  Also, ALT, bilirubin and AST have been or are now elevated. 

Just got out of hospital with cellulitis due to very swollen ankles and calfs and immunosupressant state.

Had gallstones and eventually gallbladder removed shortly after UC diagnosis. 

Has anyone else with UC, taking 6mp and or remicade had a diagnosis of AIH? Does the 6mp and remicade contribute to the liver cirrhosis?

Does this autoimmune stuff ever stop?  The last three years have been a nightmare of one thing after another - UC, renal cell carcinoma, gallstones, gallbladder removed, part of kidney removed, cellulitis in right leg, joint, muscle and tendon pain and weakness, and now possible AIH.    It is not clear to me what is causing what - the uc causing other stuff, the drugs causing side effects?? 

And the worst part is that his all started after I quit smoking and lost 100 lbs. 

I saw there is a group for hepatitis, but I interested in thoughts from those who have UC and take 6mp and/or remicade. 

Posted 9/23/2014 1:34 PM (GMT 0)
ugh, what a nightmare! Have you seen a rheumatologist yet? These docs are much more experienced in autoimmune issues than GIs.
Posted 9/23/2014 2:09 PM (GMT 0)
"And the worst part is that his all started after I quit smoking and lost 100 lbs. "


I bet you don't do that again ;-)

sorry you're having more sh!t added to the pile :-(

I agree with kaz - try to see a reumy if you haven't already -

hang in there HD -
Posted 9/23/2014 3:21 PM (GMT 0)
Technically, UC doesn't cause anything but UC. You may have a systemic inflammation problem that causes both UC and other things so you can get other things before, during, or after UC but it is not the UC that is actually causing them but whatever your main problem is. Several UC meds weaken the immune system which can cause a variety of different things. Many times it all boils down to the chicken or the egg queston so you never really now which came first or what caused what.
Posted 9/23/2014 8:44 PM (GMT 0)
Gary, Soy and Kaz  Thanks for your replies and reading my rant.  I guess this is not a widespread remicade/UC problem afterall.  Since liver problems, joint and muscle pain and edema are listed as side effects of remi, I thought it would be a more common problem among the UC group.  At least all the testing showed I do not have drug induced LUPUS.  I do have an appointment with a rheumy in October (took six months to get in) and my GI doc is referring me to a hepatology doc.

Soy, as for smoking and weight loss, yes I will probably have to lose weight again since I gained it back after the UC diagnosis.  Probably won't start smoking again, although it is tempting.   

Posted 9/23/2014 10:04 PM (GMT 0)
While UC doesn't technically "cause" other diseases, it can affect organs in the body other than the colon. Here is a reference

www.medscape.com/viewarticle/550723
Posted 9/24/2014 6:10 AM (GMT 0)
Happyday- just wanted to say I'm SO sorry to hear about the hepatitis. Sending support your way!
Posted 9/24/2014 11:42 AM (GMT 0)
Judy2 Thanks for the reference.  It was very informative.  Also found a good article on the new thinking on fibromyalgia. 

Contentprof  Thanks for the support.  I was thinking of you and Thoreau when I posted, knowing you two have had the remi pains.  I was sure I had the DIL, but the testing showed something equally scary and still a possible source of the pains.  From what I have now read, I think it is probably a mild case and caught early.  So it should be treatable.  But I guess I should wait to see what the doc says. 

Everyday is a new adventure with this disease. 

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