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Auto-Immune Hepatitis
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hunnebeee posted:
Everyone always talks about Hepatitis C. I would like to discuss
Auto-Immune Hepatitis. I was told my Auto-Immune Hepatitis was caused from over-the-counter medicines. OTC drugs with acetaminophen and other ingredients. I never was a pill popper; however, I use to take three tylenol, or other head-ache pills (not together, of course.) because two gave me no relief. I found out I was at stage three auto-immune hepatitis and then started taking steriods and immuran. Also, I gave my blood every week for over two and a half years and had biopsies.I would love to discuss with anyone else how this disease has affected their life and if they have been healed or are in remission.
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oldtiff47 responded:
I KNOW OF NO ONE HERE NOW THAT HAS AUTOIMMUNE HEPATITIS..SOMEONE DID ASK ABOUT IT A FEW POSTS BACK....HERE IS A GOOD SEARCH I DID ON IT

http://www.google.com/search?hl=en&rlz=1B3GGGL_enUS280US280&ei=t8OiS-3OJJvsNYuhpdsI&sa=X&oi=spell&resnum=0&ct=result&cd=1&ved=0CAkQBSgA&q=Autoimmune Hepatitis&spell=1

PERHAPS YOU CAN FIND HELP THERE....BUT DO COME BACK HERE AND STAY WITH US IF YOU CAN...

TIFF
 
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An_192538 responded:
I too have been just diagnosed with chronic hepatitis. They believe that it is autoimmune, but we're waiting for the final bloodwork. I don't drink, don't do drugs, not exposed to the virus. I do have a thyroid problem and take thyroid replacements. I don't take alot of over the counter medicines. I did have a gallbladder surgery that went bad about 2 years ago and now my liver drains into a section of my intestine. Can autoimmune hepatitis be triggered by stress or if there is a problem with the main bile duct?
 
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truequester responded:
Hello hunnebeee, your diagnosis and treatments are identical to my own. Even the length of time is uncannily identical. Unfortunately, I don't have any miracle stories to tell. Taking the medication prednisone did improve the enzymes in the liver, in order to, take the lesser evil immuran. I hated the prednisone side effects though. The list seems endless of what you could get from taking over a certain length of time. I seemed to have majority of them and I had to take two additional medications to counteract those caused by prednisone. One is a low key blood pressure because my once wonderful blood pressure was now forever changed to needing med's to help keep lowered blood pressure. Ugh! Also, I had to take anti-depressant effexor, low dosage thank God, to deal with the elevated mood and depression symptoms associated with taking this strong steroid. The Immuran is hugely better than Prednisone. I am no model patient, however, because I have slacked off from doing the regular checkups, blood tests, taking the medications, etc. I have found doing meditations has reduced my stress level to a managable level and I no longer need anti-depressants. Yeeaaahhh! The best advice I can give is hang in there, you are not alone by any means. They are finding countless other people with the same diagnosis as us. There isn't a specific reason for our conditions but their understanding of it is increasing. I was told by my doctor that my condition was probably caused by my continued usage of ibuprofen in regular and heavy dosage over several years during my teenage and young adult years may have triggered the auto immune. Medications, whether prescribed or OTC with the active ingredient in ibuprofen and other pain relievers, are now forced to put a disclaimer (warning) on their labels about possible liver damage. That would have been nice to know about years ago when it may have been possible to avoid organ damage. Hope I have helped somehow. God speed and blessings be with you. Again, KEEP YOUR HEAD UP! Smile.
 
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CplusAuto responded:
I have both C and autoimmune but haven't started treatment yet.
 
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oldtiff47 replied to CplusAuto's response:
I JUST POSTED TO YOU ON ROLL CALL POST....

HERE IS THAT POST

WITH MY 11 YEARS ON LINE I THINK YOU ARE THE FIRST I HEARD OF BOTH AUTO AND HCV AT THE SAME TIME......SOUNDS TO ME LIKE YOU HAVE GOOD MD'S...

I DID 48 WEEKS OF TX 11 YEARS AGO AND CLEARED AND MY STAGE 4 LIVER IS HAPPY I DID IT TOO....HARD YES BUT MOST CAN CONTINUE WITH THEIR NORMAL LIFE WITH SOME MODIFICATIONS....IT DOES NOT PUT MOST PEOPLE DOWN AND IF IT GETS TOO BAD ....THE DOCTORS CAN HELP YOU...

PLEASE COME BACK AND SHARE WITH OTHERS IT HELPS US TOO...

TIFF...

ps I AM NEVER YELLING JUST ALWAYS IN CAPS IT IS KINDA MY HANDLE NOW...
 
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auntiepeaches responded:
Dear hunnebeee. Since 1983 when I was first diagnosed with chronic active hepatitis Type non-A; non-B; non-C and was later classified as autoimmune, which by the way, was easily controlled with steroid and azathioprine and/or imuran. However, after many years, it has taken toll on my liver and after several biopsies was told cirrhosis had developed. From there, tumor, then hepatocellular carcinoma. I underwent to ChemEmbo but that was just to prolong my life and am still taking meds to control the inflammation of the liver. The biggest problem of this condition is ascites, depression, and all that comes with this disease. Having this disease has affected me mentally and physically and no doubt witht he rest of my family members. The only good advice I can give you is 'HOPE' and lots of support from friends and family. If you would like to e-mail directly you may at : mawigirl@msn.com
 
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jal333 responded:
I was diagnosed with AutoHep in June of 2008. Working with great hepatologist at Mayo since then, I am not having normal blood tests every 8 weeks. As far as the cause for my AutoHep, I have to believe it was a combination of taking herbal drugs and stress over a period of time. Simply put, my body and liver were at war and the doctor and I never could agree on a root cause, only that I have this chronic condition. As an over 60 year old, it was quite a shock to me when I was diagnosed, since my primary symptoms, fatigue, and some skin itching, with a few marks on my body did not seem atypical. I am most careful now regarding my medications, and all my doctors know about this condition, albeit in remission. I stay in touch with the www.liverfoundation.org/ and of course my doctor. More people need to learn about AutoHep and I am hoping WebMd gives it more coverage.
 
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jal333 replied to oldtiff47's response:
I have been diagnosed with AutoHep and if people have questions, I can share my personal experiences.
 
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jal333 replied to An_192538's response:
Have you had a liver biopsy? Ultimately this is one of the best ways to diagnose AutoHep relative to others tests. Stess of any time is absolutely a factor in causing AutoHep.
 
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jal333 replied to truequester's response:
I was on Prednisone for almost 18 months and it does have such incredible side effects, but it did help me control my AutoHep. I was allergic to Imuran and was forced to stay on Prednisone. I would strongly recommend that people stay away from herbal remedies as well as ibuprofen and acetominphens as well. It's worth it to take the blood tests and keep yourself healthy. Additional liver damage and liver transplants and ashould be avoided at all costs.
 
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jal333 replied to CplusAuto's response:
How are you doing?
 
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mccindy responded:
Hello,
I have been in remission for about 3 years now. My autoimmune hepatitis happened 6 years ago. I am suppose to have blood work done every month. I cheat and only go about every 3 months. I have very bad veins, so I put it off.

I can only guess what caused my hepatitis...the stress of worrying about my daughter after her head injury from a snow mobile accident. The doctors never gave me their opinion of why it happened. Infact they didn't diagnose it until my ALT and AST was so high I was close to needing a transplant.

The damage that is done to my liver is in one of the ducts. I don't recall which one. I also took prednisone and immuran.

If you have any questions or just need to talk...I will be here.
Cindy
 
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mccindy replied to An_192538's response:
Hi,
I also have a thyroid disease and have for many years. I didn't do drugs, hardly drank and have been married for 35 years. The doctors had a hard time diagnosing the autoimmune hepatitis. 6 years ago there was a lot less information out there about it.
I do believe my hep. was caused by stress. There was a very stressful family crisis, and when I was diagnosed with the auto hepatitis that year, my husband and daughter were both also diagnosed with an auto immune disease. How rare is that?
I do remember one of my doctors saying that autoimmune hepatitis is some how related or connected to the fact that my mom had Crohn's disease...also an autoimmune disease.
I do have damage to one of my ducts, but I don't remember which one. If I ever need a transplant it will have to come from a cadaver because of the damage.
Cindy
 
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CplusAuto replied to jal333's response:
One week after starting Prednisone my enzyme levels were back to where they were 6 months ago so I think It's working. Side effects for me so far are feeling really hyper (is this what speed freaks LIKE?!?!) and always hungry. Sure explains the weight gain! ACK! I go for more blood tests in a couple of days, so we'll see.