When you stop medications for AIH (PBCers never stop medication)

[Guest guest]

   First I want to stress the danger of going off medication before your

doctor's tests show that you are indeed in remission.....NEVER go by how you

FEEL!  You feel good because your medication is working..    As for myself,

I am a PBCer who has had a transplant, but even though I have a nice healthy

liver now I still have to take URSODIOL as the TX isn't really a cure.  PBC is

still in my system so as a preventive measure I still take my meds.  Plus, the

additition of anti-rejection

meds.                                     Â\

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 Â Â Â Â  So please, remember that autoimmune hepatitis is a LONG TERM DISEASE

in which your body’s immune system attacks liver cells.

  With proper treatment, autoimmune hepatitis can usually be CONTROLLED . The

main treatment is medicine that suppresses the body’s overactive immune

system.                                    Â\

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Duration of treatment — As a general rule, treatment is continued until the

disease is in remission, the treatment fails, or the person develops severe side

effects from treatment.

Remission is defined as a lack of symptoms, near normal levels of LIVER BLOOD

TESTS  and improvement in the appearance of liver tissue (AND LIVER BIOPSY).

The initial period of remission generally occurs 12 or more months after

treatment begins. Approximately 65 and 80 percent of patients achieve remission

by 18 months and three years, respectively.

Approximately 50 percent of patients remain in remission or have only mild

disease activity for months to years after treatment is stopped. However, most

patients must eventually restart treatment because the disease becomes active

again (relapse). Relapse typically occurs within the first 15 to 20 months after

treatment is stopped. Relapse is more likely in those who have cirrhosis on the

initial liver biopsy.

If medications not recommended — Close follow-up is recommended for people

who are not initially treated with medications. Follow-up generally includes a

physical examination and blood tests every few months, and a liver biopsy is

usually repeated at least every two years.

Self care — Taking medication and seeing a healthcare provider on a regular

basis can help to ensure that the liver remains as healthy as possible.

Diet — No specific diet has been shown to improve the outcome in patients

with autoimmune hepatitis. The best advice is to eat a normal, healthy and

balanced diet and to avoid becoming obese; obesity can increase the risk of

fatty liver disease and can cause complications of autoimmune hepatitis.

Alcohol — Alcohol should be avoided since it can cause fatty liver and other

liver damage. All types of alcoholic beverages can be harmful to the liver,

including beer, wine, and liquor. Patients with liver disease may worsen with

even small amounts of alcohol.

Exercise — Exercise is good for overall health and is encouraged, but it has

no specific benefit for people with autoimmune hepatitis.

Prescription and nonprescription drugs — Many drugs are broken down by the

liver. Thus, it is always best to check with a healthcare provider or pharmacist

before starting a new prescription. Unless the liver is already scarred, most

drugs are safe. Some people with active liver disease will be advised to take a

smaller dose of medication.

An important exception is acetaminophen (Tylenol), commonly used for headaches,

other aches and pains, and fever. In people with any type of liver disease, the

maximum recommended dose of acetaminophen is no more than 2000 mg (in divided

doses) per 24 hours. Thus, it is reasonable to take 500 mg every four to six

hours, although this should not be repeated more than four times in one day.

Herbal medications — There are a number of claims, particularly on the

internet, that herbal medications can improve liver health. However, no single

or combination of herbs has been proven to improve outcomes in patients with

autoimmune hepatitis. Some herbs can cause serious liver damage. For this

reason, we do not currently recommend any herbal treatment for liver disease.

Support — Do not underestimate the value of sharing your concerns with other

people with autoimmune hepatitis.