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Liver & Pancreas Disorders Message Board


Liver & Pancreas Disorders Board Index


[B]Disclaimer:[/B] I apologize if this is incoherent, I'm very shaken up.
[B]Background: [/B]I have autoimmune fibrosing pancreatitis and ulcerative colitis. I got these in my teens and have them completely under control; they do not affect my life in any way and it's almost like I don't even have these diseases. I take 50mg of mercaptopurine, 25mg of allopurinol every other day, and I'm not sure about my lialda dosage, but I take that as well.

Over the past year or so, my gastroenterologist has noticed that my liver enzyme levels have been high every other time I have visited her (every 6 months) and my mercaptopurine levels were slightly lower. I chalked this up to me being irresponsible with taking my medicine because I honestly did take it for granted at times and missed many doses. Recently, my liver enzyme levels have been consistently higher and my mercaptopurine levels have been almost nonexistent despite me being VERY responsible about taking my medicine for an upwards of ~4 months.

My gastroenterologist decided that I need to get an ultrasound and an MRCP scan to check out if my liver was okay and the results showed that it looked completely fine; it wasn't fatty or inflamed or anything. She also recently upped my dosage of mercaptopurine by 25mg (it was 25mg originally, I've been taking a higher dose for over a month) because she thought I may have been metabolizing my original dose too fast. This made sense to me because I have gained a lot of weight and muscle since I was originally prescribed the 25mg dose.

She wanted me to take the upped dose for 2 weeks and get bloodwork done as a last ditch effort to see if my liver enzymes and mercaptopurine levels were improving, but I had complications setting up an appointment for that time. This resulted in me having to wait an additional 2 weeks before I could get bloodwork done. Apparently she was not okay with this because she is actually very concerned for me... She didn't really convey this to me out of all of the times I've met with her, so originally I didn't see the extra 2 weeks as a problem. There is nothing I can really do on that front...

If my bloodwork doesn't show improvements, I'm going to have to have a liver biopsy to check to see if my liver ducts are doing okay since they couldn't be seen during the MRCP (they're small). I was just wondering if anyone here could give me some insight on my situation or could relate to me at all. I'm very worried that I'm developing some sort of autoimmune disorder due to me being irresponsible back when I didn't take my meds properly. I think that may be the case because at one point I was taken off my meds for about 2 weeks and that caused me to develop colitis. I'm also very scared that I may have hepatitis C, and I can't help but feel completely destroyed if that is the case.

Again, if anyone could give me some insight... You don't know how much I would appreciate it.

EDIT: By the way, I've felt completely fine throughout all of this; I haven't noticed any changes in my day to day life since I found out my liver enzymes have been elevated. This makes my situation seem a lot scarier to me :(





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