autoimmune hepatitis

[kazoo]

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...

[Jay Tor]

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.
[url="http://clinicaltrials.gov/ct/gui/action/SearchAction;jsessionid=39C1E1A0F6C3C7E2 E5F652E0E390E551?term=GVHD&submit=Search "]http://clinicaltrials.gov/ct/gui/action/SearchAction;jsessionid=39C1E1A0F6C3C7E2 E5F652E0E390E551?term=GVHD&submit=Search[/url]

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

[heavenly]

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.

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

[kazoo]

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!

[mom122002]

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