Discussions By Condition: Autoimmune Disease

Autoimmune Hepatitis

Posted In: Autoimmune Disease 13 Replies
  • Posted By: Jeanne
  • October 8, 2007
  • 03:58 AM

I was just confirmed as having this rare and awful disease, and I'm pretty devastated. I'm having a Liver biopsy next week, which of course will tell me more. Right now my symptoms are elevated Liver enzymes, mild weight loss, fatigue, itching, positive ANA, Rheumatoid Arthritis (not severe at this point) and very dry eyes. In addition to not knowing what to expect re: progression (I know it is a very individual thing), I'm DREADING the thought of Prednisone. Can anyone tell me anything about alternative treatment to Prednisone? Thank you very much. I'm 54 and female and am very fit and healthy prior to this.

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  • Jeanne,I was diagnosed with Autoimmune Hepatitis in 2003. I had a flare up in 1996 which was misdiagnosed as HELLP Syndrome. Autoimmune Hepatitis is a pretty cruddy diagnosis. I remember where I was and what I was doing when I got the diagnosis and the way my heart dropped hearing the words. I am extremely fortunate, by the time my GI doctor found out exactly what was wrong with me, my liver enzymes had started dropping. She checked them weekly for awhile, then biweekly, they went back to normal on their own in about 2 months. I never had to take the prednisone. I get my liver enzymes checked every year or so to ensure that everything is still I see that your post is over 2 months old so I hope by this time you have been able to make peace with this diagnosis.
    muffin top 15 Replies
    • December 2, 2007
    • 00:51 AM
    • 0
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  • Jeanne,I was diagnosed with Autoimmune Hepatitis in 2003. I had a flare up in 1996 which was misdiagnosed as HELLP Syndrome. Autoimmune Hepatitis is a pretty cruddy diagnosis. I remember where I was and what I was doing when I got the diagnosis and the way my heart dropped hearing the words. I am extremely fortunate, by the time my GI doctor found out exactly what was wrong with me, my liver enzymes had started dropping. She checked them weekly for awhile, then biweekly, they went back to normal on their own in about 2 months. I never had to take the prednisone. I get my liver enzymes checked every year or so to ensure that everything is still I see that your post is over 2 months old so I hope by this time you have been able to make peace with this diagnosis. Thanks so much for responding to me. A lot has happened since I wrote that and I would LOVE to "speak" with you further in email. I'm not sure how this works, but here is my address and please write me. I have an interesting story to tell.I'm at ijean100@hotmail.com Thanks so much.
    Jeanne 1 Replies
    • December 2, 2007
    • 10:11 PM
    • 0
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  • Hi. I'm a great-grandmother with auto-immune hepatitis for the past 4 years. Unfortunately I had to progress to end stage liver disease before my family was able to find a gastro/hepatologist who had a brain. 3 hospitalizations, 4 gastroenterologists & all I got was "well, it's not viral hepatitis so why don't you go home & see what happens?" The idiots: my labs were off the charts, my body was completely banana yellow, & I was so toxic I couldn't think straight.However, my Dr. did exactly the right thing: high doses of predinosone, Imuran, lots of laxatives (an often overlooked treatment of the high ammonia levels in body & brain). The truth is: it saved my life. For the past 4 years I am monitered every 3 months (labs) & every 6 months (alternate an abdominal cat scan or ultrasound of liver, pancreas, spleen) & so far so good. When I think of all the other diseases I could have been afflicted with I think I will keep this one. There are other symptoms of course: neuropathy of legs, fingers, lethargy, and now suddenly pettichae all over my body, and I mean all over my body. Don't have a clue why but will watch it till Monday & go see Dr. if it's not better. Oh yes, I also have high blood pressure for the first time in my life.If you go on Presnisone you should be aware that side effects come with it but they all disappear when you finally stop it. I was on it for about 4 months...got steroid induced diabetes, some vision problems, & lots of facial hair (now removed via lasar). All the above will go away...a small price to pay for living.
    H.Roberts 1 Replies
    • January 12, 2008
    • 00:57 AM
    • 0
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  • WOW. i am 16 years old and i found out i had it a very ago. i take that same medicen too. and its not fun. i was a really in good shape and alot of guys liked me at my school because of my body being in good shape. then after my winter break from school. i guess i had the worst of the desease because i black out at my school track while i was running. i woke up in the hostpital the next day. they ran test on my for a whole week until they finally found out i had autoimmune hepatitis. i started takeing pednisone. and puffed up like a blow fish. i gained 50 pound in 3 mounths. i really hope you you watch what you put in your mouth because prednison makes you every hungry almost like your pegnec or somthing. it also causes acne.i started off take 40mg. and now am at 5MG my doctor says am very luck to be weened off it like that and is imprest with my liver counts they are normal now and i might be looking at remidion with only have it for one year.
    Anonymous 42789 Replies
    • January 19, 2008
    • 10:44 PM
    • 0
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  • I am a grandmother whose doctor thinks she has autoimmune hepatitis. We are waiting for some test results before confirming. This has been going on since March, 2008. I am scared silly. Your letter made me feel better--a little bit better. If you have any advice or info, I would appreciate it. Mamacita Hi. I'm a great-grandmother with auto-immune hepatitis for the past 4 years. Unfortunately I had to progress to end stage liver disease before my family was able to find a gastro/hepatologist who had a brain. 3 hospitalizations, 4 gastroenterologists & all I got was "well, it's not viral hepatitis so why don't you go home & see what happens?" The idiots: my labs were off the charts, my body was completely banana yellow, & I was so toxic I couldn't think straight.However, my Dr. did exactly the right thing: high doses of predinosone, Imuran, lots of laxatives (an often overlooked treatment of the high ammonia levels in body & brain). The truth is: it saved my life. For the past 4 years I am monitered every 3 months (labs) & every 6 months (alternate an abdominal cat scan or ultrasound of liver, pancreas, spleen) & so far so good. When I think of all the other diseases I could have been afflicted with I think I will keep this one. There are other symptoms of course: neuropathy of legs, fingers, lethargy, and now suddenly pettichae all over my body, and I mean all over my body. Don't have a clue why but will watch it till Monday & go see Dr. if it's not better. Oh yes, I also have high blood pressure for the first time in my life.If you go on Presnisone you should be aware that side effects come with it but they all disappear when you finally stop it. I was on it for about 4 months...got steroid induced diabetes, some vision problems, & lots of facial hair (now removed via lasar). All the above will go away...a small price to pay for living.
    mamacita 13 Replies
    • September 3, 2008
    • 01:09 AM
    • 0
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  • I was diagnosed with Autoimmune Hepatitis almost 3 years ago. I was started on Imuran and Prednisone. I had to stop taking Imuran because it made me sick. Prednisone is good and bad. It lowered my liver enzymes, my liver inflamation improved. But it caused me to gain alot of weight, had a moon face, lots of mood swings. Stress seems to make everything worse. This summer my Dr. started weaning me off of Prednisone and started me on Endocort - it doesn't have the side effects of Prednisone. I also take Cellcept 2000 mg a day. I don't have the moon face and have lost 35 pounds so far since stopping Prednisone. And my labs have been normal. So hopefully this drug Endocort will work for me. Also, Dr. found out that I have a Vit. B12 def. and Vit D def., and have started meds for these. Good Luck to everyone with this disease. Prayer and faith have gotten me through the rough times.
    daisym 1 Replies
    • November 15, 2008
    • 03:01 PM
    • 0
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  • Hi i was looking through the web looking for info about moon face. I too am on Prednisolone...and Plequenil. I hate the prednislone..it makes me gain weight..and my face is puffy. I had tried a few other drugs along with the pred. but it made me sick with stomach ulcers...so they changed it to Plaquenil...it seems alot better. They have diagnosed me with Buchet's disease...which is also an immune disease..just a different name i guess. i was on a high dose of Pred. at first..i was so hungry..like i was starving..i gained alot of weight. Trying to lose it now...doing well...although my face and neck are really still very puffy....and at my weight it shouldn't be...i am a good weight for my height. I am hoping it is just side effects..and it will go away without steroids..i am on 5mg currently. Anyone out there that did not get rid of the moon face after meds..let me know...tanya69@iinet.net.au...thanks
    Anonymous 42789 Replies
    • November 21, 2008
    • 02:02 AM
    • 0
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  • I was diagnosed with this about 5 years ago. I also have Lupus and Sjgourens and was already on Prednisone which did nothing to help the disease. My doctor tried me on Imurin and I was hospitalized for almost 2 weeks in ICU with a severe reaction to it. My current doctor has me on Cellcept which have been taking for about 4 years and it is keeping the condition under control. I am also taking Urso Forte so this may be an option to discuss with your Doc. I cannot take sterods now because of the reaction I had to the Imurin which caused severe Diabities.
    cathyb 1 Replies
    • November 30, 2008
    • 07:42 PM
    • 0
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  • I am so ready for this year to be over ... 2008 has been a tough one for many I know - but to add insult to injury (economy and all) I had acute liver failure - now DX as autoimmune hepatitus ... What??? I have always been so healthy -- then to have been put to the top of a liver transplant list ... too bizaar. I still have my own liver and am thankful to be here. I hate, hate, hate my moon face and am working hard to embrace it so as to let it go. I have been on prednisone (obviously) since mid August and began Imuran the first part of Nov. The plan is to bring down the prednisone from 20mg at the moment to 10mg over the next several weeks. And to increase the Imuran from 100 mg to 150 mgs. Any one have some experience and great outcomes? Jane
    Anonymous 42789 Replies
    • December 14, 2008
    • 00:01 AM
    • 0
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  • I was just confirmed with Autoimmune Hepatitis Feb 9 2010, I'am 48 yrs old. I thought i had the flu or kidney infection. Ended up in the hospital for 2 weeks. Removed my Gallbladder and did liver biopsy. I'am now on Imuran and Predisone. I'am in worse shape now then before Diagonised. I see Dr. tomorrow, 3rd CT Scan showed fluid and spot on right Kidney. I have always been in good health and a bit of a workaholic up until about 6 mts ago, when i really started feeling ill alot and had no ambition. I was drained all the time. There is nothing i did to cause this disease per my 4 Docs. Just happens. I will update as i learn more. Thank you and my prayers are with everyone. I was just confirmed as having this rare and awful disease, and I'm pretty devastated. I'm having a Liver biopsy next week, which of course will tell me more. Right now my symptoms are elevated Liver enzymes, mild weight loss, fatigue, itching, positive ANA, Rheumatoid Arthritis (not severe at this point) and very dry eyes. In addition to not knowing what to expect re: progression (I know it is a very individual thing), I'm DREADING the thought of Prednisone. Can anyone tell me anything about alternative treatment to Prednisone? Thank you very much. I'm 54 and female and am very fit and healthy prior to this.
    Anonymous 42789 Replies Flag this Response
  • I was just diagnosed Feb. 24,2010 with Autoimmune Hepatitis. I am 55 years old. Symptoms were very jaundice, dark urine, and extremely tired, and not ambition. Had always been very healthy with lots of energy, always worked very long hours until the job was done! Now.....also feel worse since the diagnosis...think it is the predisone. Feel like crap! 2 days in the hospital, blood, blood, and more blood, ct scans, and liver biopsy. High dose of prednisone for now is all they are doing for me until more blood next week and a re-evaluate the situation. I was told I am predisposed to get this disease since my mother has ms and a grandmother with rhumetiod arthritis. I will keep you posted and pray as well.Just read a helpful book.....Hepatitis and Liver Disease...by Melissa Palmer, MD all you need to know about your liver and more!I was just confirmed with Autoimmune Hepatitis Feb 9 2010, I'am 48 yrs old. I thought i had the flu or kidney infection. Ended up in the hospital for 2 weeks. Removed my Gallbladder and did liver biopsy. I'am now on Imuran and Predisone. I'am in worse shape now then before Diagonised. I see Dr. tomorrow, 3rd CT Scan showed fluid and spot on right Kidney. I have always been in good health and a bit of a workaholic up until about 6 mts ago, when i really started feeling ill alot and had no ambition. I was drained all the time. There is nothing i did to cause this disease per my 4 Docs. Just happens. I will update as i learn more. Thank you and my prayers are with everyone.
    Anonymous 42789 Replies Flag this Response
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  • Just know that you are not alone! I was just diagnosed with autoimmune hepatitis on the 24th of Feb. 2010 and was devastated. I am 55 years old, always in great health, active, work till the job is done....then all of a sudden lack of ambition, extreme fatigue, jaundice, dark urine. Blood work, ct scan, liver biopsy, now high dose of prednisone and feel even more like crap. My doc says that I am predisposed for this since my mother has ms, grandmother has rhumetoid arthritis, guess I have the gene. Back again next week, blood work again. Read a great book that might help answer questions and tell you all about your liver....Dr. Melissa Palmers Guide to Hepatitis and Liver Disease. Would love to stay in touch if you would like to talk....sounds like this is can be a life long challenge and we will need all the support we can get. Your friend, Cyndie I was just confirmed with Autoimmune Hepatitis Feb 9 2010, I'am 48 yrs old. I thought i had the flu or kidney infection. Ended up in the hospital for 2 weeks. Removed my Gallbladder and did liver biopsy. I'am now on Imuran and Predisone. I'am in worse shape now then before Diagonised. I see Dr. tomorrow, 3rd CT Scan showed fluid and spot on right Kidney. I have always been in good health and a bit of a workaholic up until about 6 mts ago, when i really started feeling ill alot and had no ambition. I was drained all the time. There is nothing i did to cause this disease per my 4 Docs. Just happens. I will update as i learn more. Thank you and my prayers are with everyone.
    Cyndie Thomas 2 Replies Flag this Response
  • I am a 55 year old female and was just diagnosed too on the 24th of Feb. I am still very devastated as well. If it will ease your mind a little, the biopsy is not that bad. Not any worse than a dental procdure. I am on prednisone and not happy at all, but they don't seem to have any other options at this time. I am on a very high dose and feel terrible, I am not one to take any kind of drug, not even asprin, so this is really a challenge. But hopefully they say the dose will be lowered as time goes. Good luck to you and stay in touch if you need some support. Cyndie I was just confirmed as having this rare and awful disease, and I'm pretty devastated. I'm having a Liver biopsy next week, which of course will tell me more. Right now my symptoms are elevated Liver enzymes, mild weight loss, fatigue, itching, positive ANA, Rheumatoid Arthritis (not severe at this point) and very dry eyes. In addition to not knowing what to expect re: progression (I know it is a very individual thing), I'm DREADING the thought of Prednisone. Can anyone tell me anything about alternative treatment to Prednisone? Thank you very much. I'm 54 and female and am very fit and healthy prior to this.
    Cyndie Thomas 2 Replies Flag this Response
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