Guest guest Posted January 4, 2011 Report Share Posted January 4, 2011 Hello Everyone. I am new to this board. I wanted to learn more about AIH and other liver diseases and hopefully receive feedback from others based on their experiences. At this point it is unclear what I have. Since mid Sep 2010 I had significantly elevated liver function tests (LFTs) (ALT peaked at 1,800), with jaundice, tiredness, digestion problems. By most measures it was a pretty severe acute hepatitis. By November the ALT had fallen to 260 and I have been asymptomatic, but in December the LFTs went back up again (ALT=750). I am still feeling normal. Hep A, B, C, E, or G viruses were all negative, and a rather large list of autoimmune antibody tests also came up negative. Liver biopsy showed fair damage to liver, but no cirrhosis (yet), and was otherwise inconclusive in identifying the cause. So were the ultrasound and CT scans earlier. My liver specialist initially thought I may have an " uncommon form of AIH " and wanted to put me on Imuran, but later ruled out AIH due to lack of specific autoimmune indicators. He also ruled out other autoimmune diseases like PBC, and ruled out tumors. At this point, he is unable to diagnose. Interestingly, I had a more mild elevated ALT episode 10 years ago also (ALT peaked at 400), which returned to normal after about four months. At that time, all hep virus and a various antibody tests were also negative. Since then my LFTs have been all w/in normal range. So a few months ago my liver got nailed with something that caused significant liver inflammation and short-term jaundice (but no liver enlargement or pain at all). From what little I know, I think I may have AIH simply because of what happened 10 years ago, although it is unclear whether the two events are really related. I would greatly appreciate any feedback or observations you may have on what I wrote above. Does AIH manifests itself with periodic flare-ups that get worse with each flare-up? And in-between flare-ups, do the LFTs return to normal or do they chronically remain elevated? Thank you. Lazsas (male, 47, in N. Cal.) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2011 Report Share Posted January 5, 2011 Lazaas, I did for the first time had AIH some 10 years ago and at that time decided not to take prednisone or any other medication. I wanted to see if the liver functions would go back to normal. They were high and I was on other medications for other things and felt that the medication and stress was causing this. It did take about 6 - 10 months before it went back to normal without medication. It did flare up again 2 years ago and I decided to take medication for it. I am back to normal with medication and doing okay. I think that the flare up came back due to stress, again. This is my observation based on experience. Not sure if I would not take medication for a flare up again. I think it depends on your situation and your discussion with your doctor. Obviously, if it did not clear up I would of had to eventually take medication on the first round of AIH. I would not recommend it unless you know what you are doing. Good luck and always do research before making any decisions pertaining to your health. I hope that helps. > > > Hello Everyone. I am new to this board. I wanted to learn more about AIH > and other liver diseases and hopefully receive feedback from others > based on their experiences. > > At this point it is unclear what I have. Since mid Sep 2010 I had > significantly elevated liver function tests (LFTs) (ALT peaked at > 1,800), with jaundice, tiredness, digestion problems. By most measures > it was a pretty severe acute hepatitis. By November the ALT had fallen > to 260 and I have been asymptomatic, but in December the LFTs went back > up again (ALT=750). I am still feeling normal. Hep A, B, C, E, or G > viruses were all negative, and a rather large list of autoimmune > antibody tests also came up negative. Liver biopsy showed fair damage to > liver, but no cirrhosis (yet), and was otherwise inconclusive in > identifying the cause. So were the ultrasound and CT scans earlier. My > liver specialist initially thought I may have an " uncommon form of AIH " > and wanted to put me on Imuran, but later ruled out AIH due to lack of > specific autoimmune indicators. He also ruled out other autoimmune > diseases like PBC, and ruled out tumors. At this point, he is unable to > diagnose. Interestingly, I had a more mild elevated ALT episode 10 years > ago also (ALT peaked at 400), which returned to normal after about four > months. At that time, all hep virus and a various antibody tests were > also negative. Since then my LFTs have been all w/in normal range. > > So a few months ago my liver got nailed with something that caused > significant liver inflammation and short-term jaundice (but no liver > enlargement or pain at all). From what little I know, I think I may have > AIH simply because of what happened 10 years ago, although it is unclear > whether the two events are really related. > > I would greatly appreciate any feedback or observations you may have on > what I wrote above. Does AIH manifests itself with periodic flare-ups > that get worse with each flare-up? And in-between flare-ups, do the LFTs > return to normal or do they chronically remain elevated? > > Thank you. > Lazsas > > (male, 47, in N. Cal.) > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2011 Report Share Posted January 5, 2011 My UCSF hepatologist is n s. No, LFTs don't always return to normal. After ten years, mine haven't. Many of us need immunosuppressants for life. Sometimes people are able to go off immunosuppressants but need to return to them. Yes, flare-ups are possible even with meds. Monitoring varies: I began at three times a week. This month, I've gone to four times a year. Changes in LFTs can occur rapidly or slowly. Harper [ ] No diagnosis > > > > > > > Hello Everyone. I am new to this board. I wanted to learn more about AIH > and other liver diseases and hopefully receive feedback from others > based on their experiences. > > At this point it is unclear what I have. Since mid Sep 2010 I had > significantly elevated liver function tests (LFTs) (ALT peaked at > 1,800), with jaundice, tiredness, digestion problems. By most measures > it was a pretty severe acute hepatitis. By November the ALT had fallen > to 260 and I have been asymptomatic, but in December the LFTs went back > up again (ALT=750). I am still feeling normal. Hep A, B, C, E, or G > viruses were all negative, and a rather large list of autoimmune > antibody tests also came up negative. Liver biopsy showed fair damage to > liver, but no cirrhosis (yet), and was otherwise inconclusive in > identifying the cause. So were the ultrasound and CT scans earlier. My > liver specialist initially thought I may have an " uncommon form of AIH " > and wanted to put me on Imuran, but later ruled out AIH due to lack of > specific autoimmune indicators. He also ruled out other autoimmune > diseases like PBC, and ruled out tumors. At this point, he is unable to > diagnose. Interestingly, I had a more mild elevated ALT episode 10 years > ago also (ALT peaked at 400), which returned to normal after about four > months. At that time, all hep virus and a various antibody tests were > also negative. Since then my LFTs have been all w/in normal range. > > So a few months ago my liver got nailed with something that caused > significant liver inflammation and short-term jaundice (but no liver > enlargement or pain at all). From what little I know, I think I may have > AIH simply because of what happened 10 years ago, although it is unclear > whether the two events are really related. > > I would greatly appreciate any feedback or observations you may have on > what I wrote above. Does AIH manifests itself with periodic flare-ups > that get worse with each flare-up? And in-between flare-ups, do the LFTs > return to normal or do they chronically remain elevated? > > Thank you. > Lazsas > > (male, 47, in N. Cal.) > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2011 Report Share Posted January 5, 2011 Keep in mind that those with AIH who respond to standard treatment (and continue it as needed) can look forward to a normal life span. Without medication, the generally published mortality rate is: Two years: 20% mortality Five years: 50% mortality Ten years: 100% mortality Obviously, there are exceptions to this pattern, but that's the basis. It's not a gamble I'd be willing to take. Harper [ ] Re: No diagnosis Lazaas, I did for the first time had AIH some 10 years ago and at that time decided not to take prednisone or any other medication. I wanted to see if the liver functions would go back to normal. They were high and I was on other medications for other things and felt that the medication and stress was causing this. It did take about 6 - 10 months before it went back to normal without medication. It did flare up again 2 years ago and I decided to take medication for it. I am back to normal with medication and doing okay. I think that the flare up came back due to stress, again. This is my observation based on experience. Not sure if I would not take medication for a flare up again. I think it depends on your situation and your discussion with your doctor. Obviously, if it did not clear up I would of had to eventually take medication on the first round of AIH. I would not recommend it unless you know what you are doing. Good luck and always do research before making any decisions pertaining to your health. I hope that helps. > > > Hello Everyone. I am new to this board. I wanted to learn more about AIH > and other liver diseases and hopefully receive feedback from others > based on their experiences. > > At this point it is unclear what I have. Since mid Sep 2010 I had > significantly elevated liver function tests (LFTs) (ALT peaked at > 1,800), with jaundice, tiredness, digestion problems. By most measures > it was a pretty severe acute hepatitis. By November the ALT had fallen > to 260 and I have been asymptomatic, but in December the LFTs went back > up again (ALT=750). I am still feeling normal. Hep A, B, C, E, or G > viruses were all negative, and a rather large list of autoimmune > antibody tests also came up negative. Liver biopsy showed fair damage to > liver, but no cirrhosis (yet), and was otherwise inconclusive in > identifying the cause. So were the ultrasound and CT scans earlier. My > liver specialist initially thought I may have an " uncommon form of AIH " > and wanted to put me on Imuran, but later ruled out AIH due to lack of > specific autoimmune indicators. He also ruled out other autoimmune > diseases like PBC, and ruled out tumors. At this point, he is unable to > diagnose. Interestingly, I had a more mild elevated ALT episode 10 years > ago also (ALT peaked at 400), which returned to normal after about four > months. At that time, all hep virus and a various antibody tests were > also negative. Since then my LFTs have been all w/in normal range. > > So a few months ago my liver got nailed with something that caused > significant liver inflammation and short-term jaundice (but no liver > enlargement or pain at all). From what little I know, I think I may have > AIH simply because of what happened 10 years ago, although it is unclear > whether the two events are really related. > > I would greatly appreciate any feedback or observations you may have on > what I wrote above. Does AIH manifests itself with periodic flare-ups > that get worse with each flare-up? And in-between flare-ups, do the LFTs > return to normal or do they chronically remain elevated? > > Thank you. > Lazsas > > (male, 47, in N. Cal.) > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2011 Report Share Posted January 6, 2011 Thanks Navy Bluecat. I wondered what I would do if my numbers were to return to normal without medication. I generally do not like to take drugs unless I really have to and taking immunosuppressants with normal liver numbers initially didn't make much sense to me. However, there are problems with that, I decided. One, the onset of the next flareup maybe much too quick to catch in time and generally by the time it is noticed (either through symptoms or via testing), you already have an inflamed liver. This means more liver damage that counts toward the future. Also, some flare ups may be asymptomatic and silently incur damage to the liver. My understanding is that returning the liver numbers to as close to normal as possible is most important to minimize permanent liver damage that may later lead to fibrosis or cirrhosis. On the other hand, immunosuppressants are not without dangers either. So it is a difficult decision which way to go in that situation. All that said, I would still have a very long discussion with my Dr. to figure out what to do, assuming I get into the situation where my numbers return to normal. Thanks for the feedback and good luck to you too. > > > > > > Hello Everyone. I am new to this board. I wanted to learn more about AIH > > and other liver diseases and hopefully receive feedback from others > > based on their experiences. > > > > At this point it is unclear what I have. Since mid Sep 2010 I had > > significantly elevated liver function tests (LFTs) (ALT peaked at > > 1,800), with jaundice, tiredness, digestion problems. By most measures > > it was a pretty severe acute hepatitis. By November the ALT had fallen > > to 260 and I have been asymptomatic, but in December the LFTs went back > > up again (ALT=750). I am still feeling normal. Hep A, B, C, E, or G > > viruses were all negative, and a rather large list of autoimmune > > antibody tests also came up negative. Liver biopsy showed fair damage to > > liver, but no cirrhosis (yet), and was otherwise inconclusive in > > identifying the cause. So were the ultrasound and CT scans earlier. My > > liver specialist initially thought I may have an " uncommon form of AIH " > > and wanted to put me on Imuran, but later ruled out AIH due to lack of > > specific autoimmune indicators. He also ruled out other autoimmune > > diseases like PBC, and ruled out tumors. At this point, he is unable to > > diagnose. Interestingly, I had a more mild elevated ALT episode 10 years > > ago also (ALT peaked at 400), which returned to normal after about four > > months. At that time, all hep virus and a various antibody tests were > > also negative. Since then my LFTs have been all w/in normal range. > > > > So a few months ago my liver got nailed with something that caused > > significant liver inflammation and short-term jaundice (but no liver > > enlargement or pain at all). From what little I know, I think I may have > > AIH simply because of what happened 10 years ago, although it is unclear > > whether the two events are really related. > > > > I would greatly appreciate any feedback or observations you may have on > > what I wrote above. Does AIH manifests itself with periodic flare-ups > > that get worse with each flare-up? And in-between flare-ups, do the LFTs > > return to normal or do they chronically remain elevated? > > > > Thank you. > > Lazsas > > > > (male, 47, in N. Cal.) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2011 Report Share Posted January 6, 2011 Hello Harper, My UCSF liver specialist is Dr. Francis Yao. I've seen him only once so far, but going back again in Feb for a followup consultation. When flare-ups occur while on meds, are the dosages of the meds increased in response? And then lowered later when the flare-up subsides? Also, are flare-ups generally more intense with each subsequent occurrance, even with meds? Thanks. Lazsas > > > > > > Lazsas, I wish I could answer your questions. > > > > In terms of your episode ten years ago: many things can cause temporary liver number elevation. As you say, your current problem and the one ten years ago might be unrelated. Most of us with AIH don't see our numbers return to normal without the intervention of medication -- if then. > > > > It sounds as if you're seeing a hepatologist who talks well with you. Is that the case? You might want to get a second opinion, as you're in a puzzling situation. My hep is at UCSF; she seems to relish puzzling situtions! > > > > I hope you're able to get a clear diagnosis soon. Until then, I suggest you avoid alcohol completely and that you inform your hep before you take any medication at all, even simple things like OTC cold remedies. Also get clearance before using any unusual herbal teas. You might want to ask at your next appt what your hep suggests you use for minor pain relief, should you need it. For example, my hep tells me to avoid aspirin and okays reasonable amounts of Tylenol. This advice wouldn't fit everyone. > > > > Have you had Hep A and B vaccines? If not, you might want to do so. My doctors strongly recommended it; they advised it for my husband as well, to give me further protection. > > > > Be sure to keep current on all vaccines -- depending on your age and health, that might include flu shots, pneumovax, tetanus, and shingles (herpes zoster) in addition to Hep A & B. I mention shingles because those of us who take immunosuppressants for AIH are particularly vulnerable to shingles, yet the vaccine's use is questionable once we begin taking those immunosuppressants. > > > > Not everyone with liver disease develops cirrhosis; I'm glad to hear that you have not. > > > > Many of us like Dr. Palmer's book, " Guide to Liver Disease " . It's a mainstream publication directed toward people new to liver disease. If you can't find it locally, Amazon has it for under $20. > > > > Best wishes. > > > > Harper > > AIH dx 2000 > > CD dx 2002 > > female, 67, northern CA like you - SF and Sea Ranch > > > > > > > > > > > > > > > > > > [ ] No diagnosis > > > > > > > > > > > > > > Hello Everyone. I am new to this board. I wanted to learn more about AIH > > and other liver diseases and hopefully receive feedback from others > > based on their experiences. > > > > At this point it is unclear what I have. Since mid Sep 2010 I had > > significantly elevated liver function tests (LFTs) (ALT peaked at > > 1,800), with jaundice, tiredness, digestion problems. By most measures > > it was a pretty severe acute hepatitis. By November the ALT had fallen > > to 260 and I have been asymptomatic, but in December the LFTs went back > > up again (ALT=750). I am still feeling normal. Hep A, B, C, E, or G > > viruses were all negative, and a rather large list of autoimmune > > antibody tests also came up negative. Liver biopsy showed fair damage to > > liver, but no cirrhosis (yet), and was otherwise inconclusive in > > identifying the cause. So were the ultrasound and CT scans earlier. My > > liver specialist initially thought I may have an " uncommon form of AIH " > > and wanted to put me on Imuran, but later ruled out AIH due to lack of > > specific autoimmune indicators. He also ruled out other autoimmune > > diseases like PBC, and ruled out tumors. At this point, he is unable to > > diagnose. Interestingly, I had a more mild elevated ALT episode 10 years > > ago also (ALT peaked at 400), which returned to normal after about four > > months. At that time, all hep virus and a various antibody tests were > > also negative. Since then my LFTs have been all w/in normal range. > > > > So a few months ago my liver got nailed with something that caused > > significant liver inflammation and short-term jaundice (but no liver > > enlargement or pain at all). From what little I know, I think I may have > > AIH simply because of what happened 10 years ago, although it is unclear > > whether the two events are really related. > > > > I would greatly appreciate any feedback or observations you may have on > > what I wrote above. Does AIH manifests itself with periodic flare-ups > > that get worse with each flare-up? And in-between flare-ups, do the LFTs > > return to normal or do they chronically remain elevated? > > > > Thank you. > > Lazsas > > > > (male, 47, in N. Cal.) > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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