Hi Cindy! Thanks for asking. Went back to the Hepatologist last week and unfortunately, my liver enzyme levels were back slightly above normal. If it had been normal again, she would have sent me on my way, but with this she's not sure what to think. She's having me try and discontinue plaquenil (which I've been taking for 5 yrs) to see if it could possibly be caused by that. My biopsy showed that I had some inflammation that the pathologist called azathioprine induced. But, I've been off azathioprine since January and any problems caused by that should have resolved itself by now.
The other thing confusing thing is that I had the flu for a couple of weeks up until the week before I took my blood test and was taking meds for that. I didn't think of it at the time I saw the Dr, but after checking, I was unknowingly taking some cough medicine that had alcohol in it. And although I had stopped taking the medicine around a week before the blood test, I was wondering if it could have irritated my liver and it was still showing up in the elevated enzymes. I was only taking 10 ml 3x a day.
I'm going back in 6 weeks to see if my enzymes have changed. But, if they haven't, she has no other ideas on what could be causing it. She'll probably will just send me back to my Rheumatologist and have him monitor my enzymes, and if they rise dramatically, they'd probably try another biopsy.
I'm just happy at this point that my biopsy didn't show any liver disease at this time.View Thread
Thanks Cindy. Yes, I'm quite relieved after having worried so much about this for over a year. I actually feel pretty good. My joints are somewhat achey and stiff in the morning, and I'm fatigued at times and have dry eyes/mouth, but that's probably all due to my Sjogren's Syndrome. It's nothing compared to what most of you have/are going through.
I did ask the Doctor is my having being positive for SMA means that it's inevitable (or at least highly likely) that I will develop AIH in the future. Didn't get a real answer to that one. I guess no one knows, and I'll just need to watch my enzymes for life. I'm just going to take things one day at a time and try to use this as motivation to eat well and exercise like I should.View Thread
Well, I saw my hepatalogist this week and got the results of my biopsy. It was very good news but puzzling as well. Basically there was no signs of any liver damage, and also no signs of AIH. However, the pathologist said that I had some azathioprine induced inflamation. This is strange because I was put on azathioprine last June when my old Rhem. was convinced I had AIH, and didn't feel the need to wait for me to see a hepatologist, or get a biopsy. Subsequent tests in Sept., Nov. and Jan 2012 showed my liver enzymes had gone down to the normal range (though high in that range), so he stopped the azathioprine. Another test in May showed slight elevation again, but I think that was due to the fact I took the blood test right after I started working out with personal trainer and my muscles were extremely sore. When I took another test again before seeing my hepatalogist, I stopped exercising for a couple weeks, and the enzymes were back to normal.
The Dr is a little puzzled as well. She's having me come back in a month and will redo my tests for smooth muscle antibody and anti-mitochondrial antibody. If my enzymes are still normal when I go back, she'll probably just have my PCP monitor my enzymes regularly. If they go up again, I'm not sure what happens then.
The Doctor did recommend I lose some weight and eat well, so I'm going to take that to heart and really try and get rid of this belly fat.View Thread
Glad the biopsy went well, and that they gave you some drugs. I got some fentanyl and versed and maybe it helped more than I thought, because I didn't feel a thing. I was so relieved to get it over with and I'm sure you feel the same.View Thread
Hi Cindy, I see the doctor on Thursday. I'm hoping for the best since my liver enzymes have been normal for most of the last year (and the time it was not, I think it was due to my starting up with weightlifting, and was sore all over). Stopped eating red meat, and fried foods for a year, and think that it's helped (or hope it did since I love hamburgers and fries). We'll see on Thursday. It's only the second time I've had an IV. First one was at my colonoscopy last year. I'm not a needle phobe, but don't enjoy IVs much. Taking it out was worse than putting it in.View Thread
I just had a liver biopsy this week. I have had Sjogren's Syndrome for the past 4 years, and last year they finally did some additional tests to see why my ALT/AST had been slightly elevated. Found that I have smooth muscle antibody, and it was assumed I had AIH. It's taken 1 year for me to get to see a hepatologist, and hopefully the biopsy will settle things, although my liver enzymes are back to normal right now..
In any case, the biopsy was not painful during or after in any way. They did sedate me, but I felt awake during the entire short procedure, and having the IV put in was more painful than the procedure itself. I can barely see where they took the biopsy, it just looks like a tiny needle stick.View Thread
Was the medication Fosamax or Actonel? My mother has been on both of them, but her condition is now so bad that she is on the strongest osteoporosis medication around (Forteo) that needs to be injected.
I do believe that stress and negativity can definitely affect the progression of this disease, and I am trying to keep a positive attitude. It has been difficult though as this is so new was so unexpected, and I have never been the most positive person.
All of this has been made even more difficult by the attitude of my Rheumatologist. One of the 1st remarks he made to me after telling me I had AIH (very-off handedly) was, "Well, now I have something to treat". I have a great primary care physician, and I think I am going to need to see him to discuss things, and to have him "translate" and see if I can get more information, if I can't get it from my Rheumatologist. I'm wondering if I should change Rheumatogists, but the pickings are slim here, and I know he is very well qualified (and was originally suggested by my PCP). I also know that it takes 4-6 months to get an appt with a Rheumatologist, so I'm stuck with this one for at least a while.
I must tell you that your remission story is giving me hope. Thank you. Take care.View Thread
Thank you for your experiences with the liver biopsy. From what I've read/heard it seems like different people's experiences vary, with some having excruciating pain, others like you, not having much pain.
I still need to get more information from my Rheumatalogist on what the benefits are to having the biopsy. If there is any damage, it is my understanding that nothing can be done anyway. And, I don't think the treatment would change based on the level of damage. I believe it they get the hepatitis under control (as determined by blood tests) they would confirm it by having a biopsy at that time.
FYI, I've been taking Fish Oil (2400 mg) a day for the past couple of years, for my cholesterol levels based on my Primary Doctor's recommendation. However, just last night I was reading that fish oil supplements are subject to oxidation and that you should only use a type that requires refrigeration, otherwise the oxidized fish oil could actually trigger autoimmune flares. I'm not sure how correct this is as I've only seen it written in one book (A Body Out of Balance).View Thread
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