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Eat Your (Own) Liver
I answered this question recently for My Family Doctor magazine:
Dear Docs,
Last year about this time, I was diagnosed with Autoimmune Hepatitis. I’ve searched books at the library and couldn’t find a thing on it. There’s Hepatitis A, B, C, and D. But nothing on autoimmune.
The specialist my doctor sent me to prescribed azathioprine and prednisone, which I had to stop because it made my blood sugar run in the 400s. Is there not an antibiotic that could be given in an IV for two weeks, instead of all these medications for five years followed by a second liver biopsy?
I’m not sure how to go about asking my doctor to slow down long enough to explain it to me. I’d just like to know what lies ahead of me, I guess.
(edited for length)
Kathy P.
Ravensword WV
Dear Kathy-
Autoimmune hepatitis is a confusing disorder with a treatment that is evolving; the good news is that it’s treatable and beatable. Let me help you out with the details.
As you probably figured out, the word hepatitis is a catch-all phrase literally meaning "liver inflammation". In fact, we tuck the suffix ‘itis’ on the end of any medical word to signify inflammation of the preceding word (appendicitis, arthritis, bronchitis, tonsillitis). Autoimmune tells us what is causing all this inflammation, as opposed to viral hepatitis (like the A, B, C, and D you read about—actually those unimaginative hepatologists are all the way up to G now).
Autoimmune hepatitis is a disease of the immune system most common in girls and young women, in which the immune system attacks the liver. We know of nothing you did to trigger this disorder. When the immune system is actively killing the liver cells (called hepatocytes), the blood levels of the liver tests (SGOT and SGPT, also called liver enzymes) are elevated. This provides a most convenient way to track the activity of the inflammation in the liver without needing to have a liver biopsy.
The treatment of autoimmune hepatitis is to turn down the immune system, so that it will stop chewing on the liver. Standard therapy is prednisone, a steroid, to decrease the immune response. To use less prednisone (as it can cause blood sugar elevations, cataracts, blood pressure problems, weight gain, osteoporosis, psychosis, and a host of other side effects), we add the drug azathioprine (imuran). Azathioprine has been used for years in transplant patients to suppress their immune systems so they will not reject their new organs, and is also used for it’s ‘steroid sparing’ effect (ie the ability to add some imuran to reduce the total dose of prednisone, to reduce those ugly side effects). Some folks with autoimmune hepatitis who cannot tolerate prednisone are on imuran alone.
A note of caution on using the library for current medical information. Docs rarely hit real books any longer; with about 600 new medical articles published daily it has been said that medical books are about five years out of date when printed. I use a subscription (paid) internet service called Up-To-Date that reviews that medical literature every couple months and analyses it. Back when I was in training circa 1992, we kept autoimmune hepatitis patients on immune suppression for life. Now the rules of the game seem to change annually basis, so I’d make sure that your specialist has contacted his/her local hospital librarian to search the internet archives of medical journals for the most current information to direct your treatment. I congratulate you on your efforts to self educate, but stick with current information sources, like the magazine in your hands!
On to the current treatment---now we seek to put you in ‘remission’. Remission is defined as those liver tests (remember that SGOT and SGPT?) being reduced to less than 2x normal, which is reached in 80% of patients by 3 years. The dosages of the drugs, once remission is reached, are adjusted to give you the least amount of medications that you need to keep you in remission. After remission is achieved, first the steroids are withdrawn gradually over 6 weeks. If the steroids are removed without relapse (an upward bump in the levels of those liver enzymes), the azathioprine is carefully withdrawn.
About 50% of patients who achieved a response in liver tests remain in remission or only have mild activity after withdrawal of the initial treatment. The remainder ‘relapse’ (the liver enzymes rise again), and are then retreated, then again carefully weaned from the medications. Over and over if necessary. Eventually ten to forty percent of patients who relapsed eventually make it to remission, and they need no more medications but liver enzyme blood work (SGOT, SGPT) every two to six months. Those who don’t make it to remission without drug-free relapse may need to be on ‘maintenance therapy’, that is, low doses of steroids and/or azathioprine for life. However, the odds are strongly in your favor that you too will get into remission.
Best wishes on your mission of remission-
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