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Elevated Liver Enzymes
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Ulcerative Colitis
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LizzyA
Regular Member
Joined : Jun 2014
Posts : 34
Posted 11/23/2017 5:55 AM (GMT 0)
Hi guys,
22 y/o female with ulcerative colitis here. A week ago I had some blood drawn before starting Entyvio. My doctor then called and informed me that my liver enzymes (AST & ALT) were mildly elevated. I had had a blood test roughly two weeks prior that came back normal.
So, the elevation is very strange for me as I’ve never had high liver enzymes before, so he sent me to get another test, which, of course, also came back elevated. I still have to be tested for viral hepatitis B & C, as well as untreated celiac’s disease and/or a possible side effecta from Lialda (I’ve taken 2x a day for about
four years. I briefly switched to Apriso three years ago & due to insurance problems, I had recently been off of Lialda for about
a month before starting back on it in September.)
However, I am completely freaking out. (Just spent an hour sobbing, actually. TMI, sorry.) I don’t think Lialda would cause side effects after years of use and I think viral hep and celiac’s are pretty unlikely as well. I don’t have the right readings for PSC and I don’t match a lot of the criteria for fatty liver...so all of this points to autoimmune hep to me. I’m very scared right now...and because the tests are going to take so long to do, get results from, etc., I am just feeling absurd amounts of stress regarding a possible future filled with not one autoimmune disease, but two...
Does anyone have any information on this? Or experience with liver enzyme problems? What is the likelihood I’ve developed autoimmune hep after just four years of UC? Is there anything I can do about
this?
Beyond that, I am also interested in possible treatments. When I googled autoimmune hep, the main course of action seemed to be steroids and an eventual immunosuppressant. Can I refuse long term pred treatment? I hate the stuff & honestly would rather refuse it than take it for over a few weeks...which I know may seem dramatic, but what is the likelihood of a new patient refusing steroid treatment? Could it be treated with another drug instead? I have a very severe reaction (nothing life threatening, but horrible mood swings, bad fluid retention) to high doses of pred and would literally rather take anything but that. Do they do short doses? Like two weeks? That’s about
the max I can take of pred without losing my mind. I also just started entyvio...would it be possible to take only that drug in lieu of Imuran or something?
I am currently on seasonique BC pills, entyvio...and I just stopped taking Lialda. I also occasionally took tramadol for pain, but my doctor has asked me to refrain from using that and Tylenol or alcohol.
Please! Any information you can provide would be much appreciated. Especially if it can hopefully set my mind at ease. I just started grad school and I don’t know how much more stress I can handle at the moment.
-Liz
iPoop
Forum Moderator
Joined : Aug 2012
Posts : 16483
Posted 11/23/2017 1:49 PM (GMT 0)
It's possible but rare for lialda to cause such results. A rare side effect.
LizzyA
Regular Member
Joined : Jun 2014
Posts : 34
Posted 11/23/2017 3:05 PM (GMT 0)
Right!
So you agree with my belief that it’s probably autoimmune hepatitis? I’d much rather it be a side effect of Lialda, but I don’t think I’m that “lucky.”
quincy
Elite Member
Joined : May 2003
Posts : 33769
Posted 11/23/2017 3:11 PM (GMT 0)
What exactly were the readings?
I suggest you get copies of all the results of your tests.
q
LizzyA
Regular Member
Joined : Jun 2014
Posts : 34
Posted 11/23/2017 3:50 PM (GMT 0)
I'm not sure of the *exact* readings. I have an appointment with my GI doc set for next week, so I'll make sure to ask him for a copy of everything.
He did tell me that it is my ALT and AST that are elevated. My liver function was good and my ALP was normal. He also told me the values of the ALT and AST, but I'm having a hard time reading my handwriting where I scribbled it down in a hurry...
I just don't understand how my levels were normal...then abnormal two weeks later. Is that common with viral hepatitis or autoimmune hepatitis? Or at all?
I have now had three separate blood tests; the first was roughly three-four weeks ago and was normal. The second was last Friday, right before my first entyvio infusion. It showed mild elevation. I had another done yesterday that was also elevated (AST and ALT).
quincy
Elite Member
Joined : May 2003
Posts : 33769
Posted 11/23/2017 4:00 PM (GMT 0)
There is a ratio determination beyween the two, and lots of reasons for raised enzymes.
Make a list of questions, get a copy.
q
LizzyA
Regular Member
Joined : Jun 2014
Posts : 34
Posted 11/23/2017 6:39 PM (GMT 0)
I will definitely get a copy of the blood panels/tests asap. It's Thanksgiving, so unfortunately everything is closed right now and I'm just sitting around worrying. My doctor did give me his email address, if I have any questions though.
What kinds of questions should I focus on asking? Is it too early to jump the gun and establish a no tolerance for pred if it is autoimmune hepatitis? I know that that is supposed to be rare, but I'm an otherwise healthy 22 y/o with ulcerative colitis...so I don't know what other liver problems I could possibly have developed.
I also read that some types of birth control pills, including the one I take, have been associated with liver problems. I've taken the pill for about
4 years with no obvious problems, but several women have reported liver tumors and other things after taking seasonique for an extended period of time. Should I also temporarily discontinue my pills and see if that lowers the enzyme levels? Or is that more of a doctor question?
TotesMagotes
Veteran Member
Joined : Mar 2013
Posts : 771
Posted 11/23/2017 7:17 PM (GMT 0)
Hopefully this makes you feel better.
I’ve had uc for over 5 years. My liver enzymes fluctuate on occasion. I’m currently on 6 mp and remicade and get bloodwork every 3 months. Depending on inflammation they can be slightly elevated. Then the next one they are lower again. My gi calls it ebbing and flowing.
Only once were they high like out of mild elevation range and that was due to 6 mp at too high a dose when I was first diagnosed.
Get the numbers and see what they are. With LabCorp in nj you can get all bloodwork results sent to you in their portal so you have access. See if your lab offers something like that.
Try and relax and enjoy the holiday. If I were you I’d use the email and ask for the numbers. Even if they come tomorrow.
FlowersGal
Veteran Member
Joined : Feb 2017
Posts : 1877
Posted 11/24/2017 4:06 AM (GMT 0)
When I went to emergency room a year and a half ago with severe bloody diarrhea they admitted me because my pancreatic enzymes were 3x normal range so they said I had pancreatis. But I had no pain. When I finally saw a GI he said other things (hadn't been diagnosed yet with UC) can mess up your enzymes. And then I got my official UC diagnosis. Try not to worry too much yet about
mild elevation. Could be a fluke, could be your birth control med, could possibly be a uc flare throwing your system out of whack. See/ talk to your dr.
LizzyA
Regular Member
Joined : Jun 2014
Posts : 34
Posted 11/24/2017 10:54 PM (GMT 0)
Thanks for all the replies guys!
I'm going back to the Path Lab tomorrow morning to have more tests run...I'm assuming these will check for specific markers that will help my doctor determine if there is something more nefarious causing the enzyme elevation. Here's to hoping he doesn't find anything out of the ordinary. Your stories have calmed me down a bit...I just hope that it is something like a fluctuation. I have had two blood tests come back elevated, but the second test was only five days after the first, so hopefully that is a possibility.
I've been flaring pretty badly for a few months (which is why I was started on Entyvio) so perhaps that has caused the enzyme fluctuation. *fingers crossed*
The Path Lab does have a patient portal that allows you to go in and view your results, but I need my patient number to view it, so I'll also ask for that tomorrow as well. I think this next round of tests take a view days to run through, so it may be a while before I hear anything.
I'm still not totally sure what to ask my doctor. I suppose I should ask him about
my BC med and whether or not I should discontinue it for the time being...other than that my main fear is being forced to take prednisone for a long period of time if it does turn out to be something so horrible as autoimmune hepatitis. I have worked so hard to stay away from pred since my UC diagnosis...I really just don't want to be forced to take it. The other treatment for autoimmune hep is Imuran...but I'm already on Entyvio, which is an immunomodulating drug. That cannot be healthy combination for longterm use either.
joe99
New Member
Joined : May 2017
Posts : 12
Posted 11/25/2017 9:21 PM (GMT 0)
Liver enzymes can sometimes be non-specific. I really wouldn't worry too much. The important thing is the trend, they may come down on there own. If they don't you may need a liver ultra sound.
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