is anyone familiar with autoimmune hepatitis or the treatment. i was diagnosed a several months ago and i'm already fed up with doctors but i keep getting sick. i feel like i have the flu all of the time... i'm missing work here and there for being exhausted or having to go see a specialist... any advice? i'm only 26 so i don't want to start on all kinds of meds, but i read that the 10 year survival rate was only 10% in chronic patients... should think concern me? i just don't know who to believe and what i should start doing independently of doctors to better my health and my life...

Hi:

Suggest you look up this article. Although it's technical, most people I know who have serious conditions pick up the technical end pretty fast.

Do the search using the title, author's and co-author's names, exactly as shown below.

Autoimmune Hepatitis
Authored by Unnithan V Raghuraman, MD, Honorary Assistant Professor, University of Alabama School of Medicine

Coauthored by David C Wolf, MD, FACP, FACG, Medical Director of Liver Transplantation, Associate Professor, Department of Internal Medicine, Division of Gastroenterology and Hepatobiliary Diseases, New York Medical College and Westchester Medical Center

This article covers diagnosis, treatments and prognoses, meds and side-effects. Basically, you need to treat this because it won't go away on its own. The meds, esp. prednisone, are a real pain with their side-effects. But the good news is that if you start on a combination protocol, you might lick this disease in a few [3] years.

Autoimmune diseases and conditions are very big news in med/sci research, so try to stick it out. There are new meds being developed and/or in clinical trials.

Also suggest you read up on graft-versus-host-disease [a side-effect of bone marrow transplant] because the symptoms and treatments are very similar. GVHD is an acquired auto-immune disease that occurs when the new [transplanted/grafted] immune system attacks the recipient. Plus, there's lots more research currently being done on GVHD than on autoimmune hepatitis including more treatment and drug alternatives.
http://clinicaltrials.gov/ct/gui/action/SearchAction;jsessionid=39C1E1A0F6C3C7E2 E5F652E0E390E551?term=GVHD&submit=Search

I mention this because my child had a BMT and subsequently developed liver GVHD. Autoimmune hepatitis whether primary or secondary is definitely no picnic. Check ACOR.org - it's for cancer and transplant patients - the GVHD area has many people with liver GVHD who've tried a number of different meds/therapies.

Good luck,
Jay

kazoo, what did your blood tests show? I've had bilirubin out for while. Then liver enzymes went out 3-4 times range. Had other tests out of range as well. I've had relapsing/remitting flareups w/progression for years, and many tests that show most of my body is affected somehow. Sent to new doc who is totally awesome. He said it looks like overlapping disease processes..most like Lupus and MS type. Last ANA was super high.

Let me know what test results you had. Thanks. http://www.healthboards.com/ubb/smile.gif

[This message has been edited by heavenly (edited 08-26-2002).]

I'm still trying to understand all of the tests and results. I'm pretty sure my ana was 1640 this past time, which had went up 3 times since my initial tests. I've had so many different tests done it's hard to keep them straight. I've been taking lots of vitamins, milk thistle, and drinking lots of water. I have been feeling ok here recently which is good since i'm getting married in 2 weeks!! Thanks for everyone's input!

Hello, My name is Veronica, and my son whom is only 12 was just recentely dx with Autoimmune Hepatitis, We only found this out with him having chronic pain in his right side, fevers of 103.3, and numerous other things. When he was admitted to All Children's Hosp. in St. Pete. Florida, he was bascially in liver failure, his liver and his spleen were enlarged due to extensive inflammation. Once they basically ruled out everything else, the were left with only one thing, the AIH, The last step to dx AIH is a liver Biopsy, so your doctor should have done one of these, this tells, them basically the extent of the damage, and the stage you are in whether Acute, or Chronic. My son is in the Chronic stage, with severe fibrosis, but no chirrohis thank god above. His specialist, which is a GI doctor, put him on Predisone (steriod) for inflammation and Immune suppresant, and Imuran which is strictly a immune suppresant. Since this his has had little pain, and his liver and spleen are back to their normal size, I know this is something, he'll never get rid of, and this diease basically makes you on meds, for many, many, years. And even if by a good chance he can get his liver enzyn. to normal and be off meds, theres a very high chance that it will return shortly after. So this is a very long going process. My only answer is to make sure you have the right doctor, you need either a GI doctor, or a hepatoligists. They specialize in this. Good luck to you and I hope you find the answers you need and deserve. Veronica

Hey everybody. I am new to this message board and I am glad to actually find people with the same condition. No one I know personally understands what is going on with this condition. I was diagnosed with Autoimmune Chronic Active Hepititis Christmas of 2001. I too am on prednisone and imuran and I absolutely hate it. I am 23 years old and I have medical problems that no one should have at any age, let alone my age. I don't smoke, don't drink, and I don't do any drugs. Apparently this is a life term condition and it is hereditary. Mind you, I am the only one in my family to have autoimmune hepititis.

If anyone has any information that I might not have, please do tell. The more information that I can get, the better.


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Take care, Amanda

hey, amandalee... we are just a few years apart... i am 26... what are the side effects that you have experienced with prednisone and imuran... i haven't started imuran, but was on prednisone for a little while until i recieved a strange test result and they told me to taper down and wait until more tests could be ran...

Hi kazoo...some of the side effects were mainly caused by prednisone. And to tell you the truth, I don't know if I had any from imuran mainly because I started imuran 2 weeks after I started prednisone.

They included water retention (I gained about 25 lbs in 2 weeks), moon face, acne, and I started growing facial hair better than my brother! The water retention fluctuated often and then eventually went away with lowering the dosage of prednisone. The prednisone also increases your appetite so you eat often and sometimes not the best types of food, so now all that water turned into fat. It is extremely hard to get rid of also because of the prednisone. Don't get me wrong...I still look alright, but not as tight as I used to be...lol.

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Take care, Amanda

[This message has been edited by amandalee (edited 12-04-2002).]

Hey Kazoo. I just saw my GI yesterday and I mentioned to him about that 10% survival rate that you mentioned in your first post. He is one of the best GI's in Canada and is well known with the Canadian Liver Foundation. He said not listen to that fact. That is not true. I think that you should only be worried if you don't take any medication and try nothing to fix it. Then you'll just have liver failure. But other than that....don't stress. Hope this helps!

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7cm cyst on spleen
Autoimmune Chronic Active Hepititis
Epilepsy w/Temporal Lobe Seizures
Kidney Infection
mild arthritis
goiter on thyroid
inflamed liver
I'm 23 and I'm falling apart! Advice???

Have you read my post:"ars but negative.." what do you think I have???????????? The Doctor's do not know. I constantly have pain(headaches, stomach pain, back, spine, neck, etc... Please respond to me.

Hi all. I am totally new to this. I'm a 41 year old female. I was diagnosed with systemic lupus 6 years ago. For the most part it has been mild. I have had several bouts of acute pancreatitis. I've had many more bouts of pain, nausea, and vomiting that felt the same as acute pancreatitis but only my liver enzymes were elevated. I had a liver biopsy done on Dec 27th. I got the results Monday and was told that I have chronic autoimmune hepatitis. I had heard of it before but really knew nothing about it. My GI told me the results, but said he wanted to wait at least two more weeks to start medication because I had surgery to repair two hernias four weeks ago and am still healing from that. He said he would consult my rheumatologist and let her decide what medication to use. The rheumatologist's nurse just called and said I have to begin taking 20 mg prednisone daily and she wants it started today.

I was in such shock when the GI doc told me what the liver biopsy showed that I couldn't even think of any questions to ask. I'm just wondering if anyone has had severe right upper quadrant abdominal pain caused by autoimmune hepatitis. I had acute pancreatitis for the first time back in Jan 2000. This round began in mid-July after about 18 months of no major problems. They really don't know what caused the acute pancreatitis and I'm just wondering if it could have been caused by the AIH.

It was my GI that scheduled the liver biopsy. However, my internal med doc had referred me to a hepatobiliary surgeon at UAB for liver biopsy and possible surgery. He basically blew me off. Told me he didn't know what was causing the recurrent acute panc, didn't agree with GI's assessment, but had no ideas as to the cause. If I did have adhesions around the bile duct/pancreas, any general surgeon could do the surgery and I didn't need him. When I asked about the liver biopsy that my internal med doc wanted done, he just said that anyone could do also do a liver biopsy. He sent me back to my GI to 'see if he could come up with new ideas as to what was causing the acute panc'. I heard him tell my GI on the phone 'well she's had at least 5 separate incidents where her liver enzymes have been dangerously elevated since july, so there must be something causing it.' This was in early October. He didn't seem interested in finding the cause though and told me we'd probably just have to manage my case from a chronic pain standpoint.

I began the prednisone this morning and will see my rheumy again on Feb 7th. I have an appt with my internal med doc this afternoon. I've got a lot of questions for him. He is not yet aware that I even finally had the liver biopsy that he requested when he did the referral back in mid-sept.

Mostly I am wondering if the AIH can cause severe RUQ abdominal pain. It's kind of under the right rib and sometimes goes through to the back. Sometimes it's also right in the middle, kind of several inches above the navel. Can this type pain go along with AIH?

I am sure it is entirely possible that I have AIH and recurrent acute pancreatitis. With lupus, you never know what will go haywire.

I know that this was posted along time ago. But I need a question answered.. My mom has Auto Immune Cronic Hep. She had it since 1997 she recently fell out of remission and her liver is now in cirrosis. My question is when you have cirrosis is there still a good chance of survival? This may sound like a dunb question but I don't know much about cirrosis.

My 18 year old daughter was diagnosed with Autoimmunce Hepatitis last September by a liver biopsy after the doctors were stumped for over a month and ran out of other tests to run. She was lucky in that her ALT and AST levels stabilized after approx. 4 months without treatment or medicine - the doctors didn't know why and continued to monitor her with lab work every few months. Her levels recently shot up again. She began vomiting frequently and had pain in her lower abdomen so the doctor ordered lab work.. We were told last September and again recently that the vomiting is not related to AutoImmune Hep - and they are treating my daughter for Acid Reflux. Does anyone with knowledge of AIH have problems with vomiting? Thank you for any info.

CuriousKid: i had cirrosis so badly because of aih, i had to have a liver transplant, and i'm fine now.

[This message has been edited by moderator1 (edited 10-15-2003).]