I'm New! What affects "your" Symptoms?

[allnatural]

I was diagnosed with AIH a year ago.  Have spent time trying to figure out what affects symptoms.  Thus far I know stress, red meat and sugar have a bad affect on my AIH.  Has anyone else done any research on things that can help or hender this disease?  Do you notice what things make you worse, or anything that helps you feel better.  When I was diagnosed my liver never hurt, they put me on 50mg of Imuran and my liver hurts all the time.  I cut the dose three months ago and the pain lessened.  I was told to stop taking the Imuran today and see what happens.  My hope is to try and figure out what I can do to help my success and what not do to cause relapse.  I eat organic, and I have homemade juice daily.  I was raised that your body will take care of itself, so this has been quite an interesting experience for me.  Any help, suggestions, or support in my efforts would be greatly welcomed.  Does anyone know of any good books or info sites that might help in my plight?      

[Jody515]

The only test that I am aware of that confirms AIH is a biopsy.  I would want one prior to starting treatment.

[normhealth]

Does anyone know if embarking on a liver detox will help? I have not had a liver biopsy yet but apparently blood tests show I have AIH? Has anyone been put directly on a costisteroid before an actual biopsy shows definitive dx? I only have three of the symptoms of AIH but is this because it is early in the disease? Do not have fatigue, but a headache for four months! Recently, eye lid swelling and jumping, pain behind the eye. I have read all the horrible side effects about prednisone and just know I will likely get them all just becuase I seem to have a senstivity to any pills ...I do not take any meds, even get nauseated if I take a Tylenol

[Here987]

Marys1358, here's a possibility. Keep in mind that I'm not a doctor, I have no medical training at all. I mention this only because it turned up for my daughter and I've since read a little about it. What about Oddi's Sphincter Dysfunction? It fits your symptoms, and it's extremely common in women who have had their gall bladders removed. I can't remember the most common age range, but it's not old, not young.
Try looking it up and/or discussing it with your doctor.
Often, people with Oddi's SD have an outpatient procedure that widens a duct. It needs to be done by a doctor with experience in the field and who has access to good technology.
The procedure changed my daughter's life in one day. In addition to the symptoms you describe, she had intermittent times of intense, prolonged vomiting that left her dehydrated.
I certainly don't know that this is your problem. However, it sounds worth looking into.
Best wishes.

[Here987]

mecatee, I'm glad to hear that you're getting such a thorough, careful overview.  Yes, everyone with AIH is different.

[Marys1358]

When you have a liver disease do you have the same symptoms as gallbladder disorder?Because I had my gallbladder remover in June and I'm having the same symptoms where the pain in right shouler,hard to swallow and buring afterwards,stomach is so bloated and sore back.I had blood drawn today it check the levels again for liver disease and I can't wait to get the results because its driving me nuts.ALT 226 and AST 236
Hope everyone is feeling ok.

Thanks,
Mary

[mecatee]

This doctor is my second opinon and he has been in practice for over 20 years.  He is the chairman of his department and has done many studies on the disease itself so I do have complete confidence.  I do see my regular doctor at least once a month who works with my hepatologist, so my levels are followed up on a monthly basis. My husband was with me at the time  of my appointment so I wasn't alone. Every patients case is different and what treatment may be good for one may not be good for others.  I am going to the Cleveland Clinic which is a reputable hospital. He said that the my levels are high but not high enough to start treatment. (ALT 148 AST 136)

[Here987]

You might want to consider a second opinion, or to ask your doctor to explain his thinking more fully. Most people with AIH are treated immediately. There are some few exceptions. The idea of not following up for six months alarms me. At the very least, I would expect that you'd be having frequent blood tests to check on your situation. Remember, I'm not a doctor. There may be very good reasons that you're not being treated. However, I'd want to know absolutely clearly that they were valid. The side effects of Prednisone, the usual first medication, can be quite unpleasant.
I'm sorry to bring this up, but there is one thing you and your doctor should keep in mind: statistically, the mortality rate for untreated AIH is 50% in two years.
Unless your doctor gives you an extremely convincing explanation (and perhaps even if he does), I'd look for a second opinion. This is a serious matter. You might want to take someone with you to the appointment to make sure you're asking all the questions you want to ask, and getting the answers you need.
Best wishes.

[mecatee]

I was just diagnosed 2 weeks ago of AIH from the results of a liver biopsy.  My enzymes just bounce around.  They are not high compared to some on here but the biopsy presented the disease. (my enzymes have tripled in the past 3 months)  My liver doctor said that right now he was not going to treat it since the treatment at this point would be worse than the disease.  I have to follow up with him in 6 months to see where we go from there.  The funny thing about it is I had the biopsy to rule out NASH and here the AIH is around my portal veins.  I was completely shocked by the diagnosis. I was tested for other autoimmune diseases like Sojogrens but so far the tests were negative. So far even though it isn't in the bad stage it is still a concern!

My biggest complaint is fatique.  I just have a general feeling of malaise like I am running a low grade fever.

[zmombomb]

Has the doc tried you on Prednisone?  When I first was "confirmed" to have AIH, she said the prednisone I had just finished for the sjogrens would tame the AIH for now.  

I do know when I eat anything fattening (ANYTHING), I get more pain in the liver.  Lately just bending over hurts my liver, which tells me mine has swollen pretty big again.  

I am now taking L-Carnitine to help bring more fats out of the liver, and Milk Thistel helps generate new healthy liver growth.  The liver transplant doctor (Dr. Gish, San Francisco) said these supplements will cause me no harm whatsoever.  

[zmombomb]

Gallstones will cause the enzyme levels to go very high, very fast.  

[Marys1358]

I was wondering what your enzyme levels were because I just got mine back and they are elevated ALT 236 and AST  226 last month ALT 28 and AST 48 Do you know what could cause them to jump so fast?Dr is taking more test in 2weeks.I'm Dx's with Lupus,Raynaud's,Arthritis and Sjorgren's so I'm thinking it could be AH or Toxicity H.would love any info. you can give me because I'm freaking out.

Thanks Again,
Mary

[Here987]

You report that you liver hurts. It may be comforting (or maybe not) to know that it isn't exactly your liver that hurts. Your liver has no nerves, no ability to feel pain. However, the capsule that surrounds it is rich in nerves and exquisitely sensitive to pressure. Also, it's possible that you're feeling referred pain from some other area.

[Here987]

Some few people can't tolerate Imuran. There are some alternatives to Imuran, other immunosuppressants, such as CellCept.

There is a test that will determine whether you can take Imuran, and if so, what the optimum dosage is. Until the last couple of years, the test was rarely given; now it's pretty common.

Our bodies sometimes take care of their selves, and sometimes they don't do a good job. In the case of autoimmune disease, the body is trying to take care of itself, but it overdoes it, attacking itself in the mistaken "belief" that it's warding off an invader.

When it comes to AIH, a good diet helps with your overall health, but it won't take care of the underlying problem, which is an overactive immune system attacking your liver.

Best wishes.