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autoimmune hepatitis information
My 19 year-old daughter has been diagnosised with automimmune hepatitis. I have been looking on the web for information and everything I see is very scary. Can someone please help me understand what this is all about.
Thanks.
Thanks.
Hi Hubb
Wow you have a lot of issuses. First in your blood tests have you had an ANA or ASMA? A liver biopsy? When you mentioned that you tested postive for EBV, I also tested postive, and later tests brought a AIH dx. I can understand how you feel, I had body aches. I hope you can get a good Dr. Hopefully your appointment Tuesday will get you some answers. It does seem like to dx AIH, they need to rule out a number of other things.
A number of your symptoms do sound like AIH. It was hard waiting for answers. Hang in there I was dx in June 04, and after treatment am now only taking Imuran. I am feeling better than I have in a year. AIH does affect many things in your body. So I have to deal with each new ailment, like joint pain. I went to an RA, found out I have oesteoarthritis, but most of my pain is from AIH.
If I can answer any questions for you, please ask. There are only a couple of us with AIH on this forum. I'll br thinking of you on tuesday.
Maari
Wow you have a lot of issuses. First in your blood tests have you had an ANA or ASMA? A liver biopsy? When you mentioned that you tested postive for EBV, I also tested postive, and later tests brought a AIH dx. I can understand how you feel, I had body aches. I hope you can get a good Dr. Hopefully your appointment Tuesday will get you some answers. It does seem like to dx AIH, they need to rule out a number of other things.
A number of your symptoms do sound like AIH. It was hard waiting for answers. Hang in there I was dx in June 04, and after treatment am now only taking Imuran. I am feeling better than I have in a year. AIH does affect many things in your body. So I have to deal with each new ailment, like joint pain. I went to an RA, found out I have oesteoarthritis, but most of my pain is from AIH.
If I can answer any questions for you, please ask. There are only a couple of us with AIH on this forum. I'll br thinking of you on tuesday.
Maari
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Hi everyone,
I could really use some help here as my luck with doctors has been pretty rotten. My liver counts have fluctuated up and down for almost a year now. I had my gallbladder removed and it actually made it worse and the pain in my upper right abdomen is awful at times. During those times, it feels like someone is squeezing my side like it feels when someone squeezes you above the knee. That nerve pain feeling. I have had every single GI test known to man but not one Dr. has pursued the elevated liver enzymes. This last time about 3 weeks ago I was experiencing that right side pain and asked primary Dr. to run blood work. The labs were normal except ALT at 155 and AST at 94 and also iron deficient anemia. At times my bilirubin is slightly elevated but that was passed off as possibly being benign. Also note there were labs that showed hypoalbuminia (sp?)(= low protein) with hypocalcemia.This cycle of elevated enzymes has gone on since last summer but there are times when I have no pain and the enzymes return to normal. After this last blood test I asked Dr. for ultrasound as the last 3 MRIs this year only showed small 7mm cyst on lobe but nothing else. I wasnt really in pain at the times of those MRIs so I thought the quick ultrasound during a time of pain would help. The report came back as such: "Liver is in upper limits of normal size, slightly prominent (16cm). Minimal liver parenchymal hypogenicity raises suspicion of mild or minimal diffuse liver parenchymal disease. Suggest LFT correlation. No other significant abnormalities seen. Cystic structure on MRI is not well seen on ultrasound." Let me translate "Ouch, my liver hurts and its swollen." Also the pelvic ultrasound showed multiple ovarian cysts but no worry, just had biopsy of one a few months ago and had gyn adhesions surgery that came back cancer free. Ok, so I was tested last summer for Hep A, B, C and was told negative. Epstein Barr virus IgG was positive but mono test was negative. Told aches and pains from CFS but Im not always sick, frequently though I get arthritis type pains where I can barely move, that horible side pain, itching. Also I am being seen by a kidney Dr. because some of those results were off like aldosterone and I lose potassium and calcium to the point of paralysis if I dont maintain supplements. I have an appt with a Hepatologist at Hopkins in Baltimore this Tuesday. Ok, my question is - is it me or does this sound like autoimmune hep? or is there anything else that would do this to me? The only drugs I take as needed are Xanax(and thats after the pain starts), ibuprofen which I now have stopped, and my supplements of calcium and Rx Potassium. It seems to me this started after a bad reaction to a sulfa antibiotic last year but its hard to say. I also get most of my pain and problems following my monthly cycle and want to know if that has any correlation to any hepatitis flare-up or could it be that I tend to take the ibuprofen around that time and it irritates what I already have. I could really use some help here. I have been sick so long and since it is all on the inside, people and Drs are getting frustrated with me and want to give up. My ALT and AST have been elevated at least 6 times that I know of this past 10 months many times to well over 100 and sometimes closer to 200. Why is it so hard to get somebody to believe how much this hurts?
Thanks, Lisa
I could really use some help here as my luck with doctors has been pretty rotten. My liver counts have fluctuated up and down for almost a year now. I had my gallbladder removed and it actually made it worse and the pain in my upper right abdomen is awful at times. During those times, it feels like someone is squeezing my side like it feels when someone squeezes you above the knee. That nerve pain feeling. I have had every single GI test known to man but not one Dr. has pursued the elevated liver enzymes. This last time about 3 weeks ago I was experiencing that right side pain and asked primary Dr. to run blood work. The labs were normal except ALT at 155 and AST at 94 and also iron deficient anemia. At times my bilirubin is slightly elevated but that was passed off as possibly being benign. Also note there were labs that showed hypoalbuminia (sp?)(= low protein) with hypocalcemia.This cycle of elevated enzymes has gone on since last summer but there are times when I have no pain and the enzymes return to normal. After this last blood test I asked Dr. for ultrasound as the last 3 MRIs this year only showed small 7mm cyst on lobe but nothing else. I wasnt really in pain at the times of those MRIs so I thought the quick ultrasound during a time of pain would help. The report came back as such: "Liver is in upper limits of normal size, slightly prominent (16cm). Minimal liver parenchymal hypogenicity raises suspicion of mild or minimal diffuse liver parenchymal disease. Suggest LFT correlation. No other significant abnormalities seen. Cystic structure on MRI is not well seen on ultrasound." Let me translate "Ouch, my liver hurts and its swollen." Also the pelvic ultrasound showed multiple ovarian cysts but no worry, just had biopsy of one a few months ago and had gyn adhesions surgery that came back cancer free. Ok, so I was tested last summer for Hep A, B, C and was told negative. Epstein Barr virus IgG was positive but mono test was negative. Told aches and pains from CFS but Im not always sick, frequently though I get arthritis type pains where I can barely move, that horible side pain, itching. Also I am being seen by a kidney Dr. because some of those results were off like aldosterone and I lose potassium and calcium to the point of paralysis if I dont maintain supplements. I have an appt with a Hepatologist at Hopkins in Baltimore this Tuesday. Ok, my question is - is it me or does this sound like autoimmune hep? or is there anything else that would do this to me? The only drugs I take as needed are Xanax(and thats after the pain starts), ibuprofen which I now have stopped, and my supplements of calcium and Rx Potassium. It seems to me this started after a bad reaction to a sulfa antibiotic last year but its hard to say. I also get most of my pain and problems following my monthly cycle and want to know if that has any correlation to any hepatitis flare-up or could it be that I tend to take the ibuprofen around that time and it irritates what I already have. I could really use some help here. I have been sick so long and since it is all on the inside, people and Drs are getting frustrated with me and want to give up. My ALT and AST have been elevated at least 6 times that I know of this past 10 months many times to well over 100 and sometimes closer to 200. Why is it so hard to get somebody to believe how much this hurts?
Thanks, Lisa
I am a 68 yr. old grandmother. I was dx'ed with AIH in Jan. 04. After having good labs for a few months, I came off meds in Jan.'05. AIH is usually treated with prednisone and/or an immunosuppressant. I seem to be in remission. Some people stay in remission for a few months to a few years. Some never relapse. I was dx'ed after getting very ill and turning bright yellow. In the hospital, I was first checked for all of the viral heps. A lot of tests and a week later they did a biopsy and dx'ed me with AIH. For most people it seems to be a very treatable disease. Some have to eventually have a transplant because for some reason they never responded to the treatment. TJS, I hope your daughter does well.
Hi tjs23
I have auto immune Hepatitis, I was dx in June 04. It did come as a shock, I had never heard of this diease before. I applaud your efforts in finding out about AIH. There are only a small number of us here. Some of the info out there is scary. My doctors, thats my family dr, gastroenterologist, and liver specialist all told me WHILE NOT CURABLE IT IS CONTROLLABLE.
There is a very good web site you should check out. AutoImmuneHepatitis.co.uk There is alot of information there about AIH and treatments. They have a forum, and a number of the people have been living with AIH for 20+ years.
You are not alone. Please ask any questions have. Most people go into remission with treatment. We learn to live with AIH and have good and bad days. It really helps to talk with others who know what you and your daughter are going through.
Maari
I have auto immune Hepatitis, I was dx in June 04. It did come as a shock, I had never heard of this diease before. I applaud your efforts in finding out about AIH. There are only a small number of us here. Some of the info out there is scary. My doctors, thats my family dr, gastroenterologist, and liver specialist all told me WHILE NOT CURABLE IT IS CONTROLLABLE.
There is a very good web site you should check out. AutoImmuneHepatitis.co.uk There is alot of information there about AIH and treatments. They have a forum, and a number of the people have been living with AIH for 20+ years.
You are not alone. Please ask any questions have. Most people go into remission with treatment. We learn to live with AIH and have good and bad days. It really helps to talk with others who know what you and your daughter are going through.
Maari
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