Aa
Autoimmune Hepatitis
My name is Marijke, I'm 27 years old and I live in the Netherlands. At the age of 15 I got serious complaints:
extremely tired, jaundice, itch,, dark urine and light-coloured
stools. I couldn't eat, if I only saw or smelled food (specially meat or anything greasy) I tended to throw up. Result: severe loose of weight. After many medical examinations (bloodtests, liver biopsie) I was diagnosed with AIH with a slight form of cirrhosis. I had to rest and was put on medication: 55 mg Prednisone and 50 mg Imuran. After 4 years I stopped taking the medication. The liver functions were almost normal. I felt good and had no complaints but my blood was still checked every 2 months. December 1998 I got pregnant. During the pregnancy I was regularly checked by my specialist and a gynaecologist. Both the pregnancy and delivery were normal with no specific complaints, the liver functions were even better than ever before.
My daughter was born healthy. After 3 months the complaints started again: tired, slight jaundice and slightly light-coloured stools. After another bloodtest and liver biopsie the specialist told me the disease had returned in a mild form but with no cirrhosis. Again I was put on medication: 30 mg Prednisone and 50 mg Imuran. After a short time of medication the liver funcions returned to almost normal again. The side effects are, untill now, restricted. My specialist is very capable and supports me very well but still I have some questions I want a second opinion about: -Is there a relation between pregnancy and the return of the disease? What is the risk of getting pregnant again (after stopping the medication)?
-Will the disease ever go away or will keep coming back and increase? If increasing, what is the perspective?
-Is there any chance my daughter might have the same disease too or is AIH only caused by viral infections?
-Which kind of viral infections causes AIH and is there a relation with animals?
I hope you can answer my questions. Thanks a lot.
extremely tired, jaundice, itch,, dark urine and light-coloured
stools. I couldn't eat, if I only saw or smelled food (specially meat or anything greasy) I tended to throw up. Result: severe loose of weight. After many medical examinations (bloodtests, liver biopsie) I was diagnosed with AIH with a slight form of cirrhosis. I had to rest and was put on medication: 55 mg Prednisone and 50 mg Imuran. After 4 years I stopped taking the medication. The liver functions were almost normal. I felt good and had no complaints but my blood was still checked every 2 months. December 1998 I got pregnant. During the pregnancy I was regularly checked by my specialist and a gynaecologist. Both the pregnancy and delivery were normal with no specific complaints, the liver functions were even better than ever before.
My daughter was born healthy. After 3 months the complaints started again: tired, slight jaundice and slightly light-coloured stools. After another bloodtest and liver biopsie the specialist told me the disease had returned in a mild form but with no cirrhosis. Again I was put on medication: 30 mg Prednisone and 50 mg Imuran. After a short time of medication the liver funcions returned to almost normal again. The side effects are, untill now, restricted. My specialist is very capable and supports me very well but still I have some questions I want a second opinion about: -Is there a relation between pregnancy and the return of the disease? What is the risk of getting pregnant again (after stopping the medication)?
-Will the disease ever go away or will keep coming back and increase? If increasing, what is the perspective?
-Is there any chance my daughter might have the same disease too or is AIH only caused by viral infections?
-Which kind of viral infections causes AIH and is there a relation with animals?
I hope you can answer my questions. Thanks a lot.
Did you happen to notice that her post was in 2000??? Not that it doesn't need answered. Just tho't I would point that out. Hope she is doing ok.
I had the same question when I was dx 2 weeks ago. The following is what was sent to me by one of those that has "been there done that". Hope it helps you as it did me. These people are awesome even if most of them are Hep C not Autoimmune.
AIH is where your immune system is too hyperactive, it's like a psycho with a shotgun goosed up on crack running around looking for trouble. The overexcited and overstimulated immune system actually mistakes your liver for some kind of foreign invader (like bacteria or viruses). This causes it to attack your liver, and when it attacks your liver it can cause very serious damage. Even more serious than what a hepatitis virus (be it hep A, B or C) can do, and even more serious than long time excessive alcohol use. It can destroy your liver in a relatively short period of time (compared to something like hep C or alcoholism which usually takes decades). So it's serious business and nothing to trifle with.
So what to do about it? Well, fortunately there's a pretty straightforward treatment for it, that to my knowledge is very effective and usually allows someone with AIH to live out a full healthy life (as long as they don't also have hep C or B). What is usually done is to prescribe a drug called prednisone. Prednisone is a steroidal drug (not the kind of steroid that makes big muscles) that suppresses your immune system. Normally you would never want to take a drug that suppresses your immune system because it makes you more likely to get sick. But in some cases it is appropriate, like in cases where someone has AIH for instance. Since your immune system is working overdrive for no good reason, it's ok to take a pill that will turn it down a few notches. And since prednisone turns down, or suppresses your immune system, it's called an "immunosuppressant." Fancy word, but just think "immune suppressed" and it's clear what it means.
Now the down side, unfortunately prednisone has its own negative side effects. It can cause various problems with your body if you take it for a long period of time, so ideally you'd want to take as little of it as possible for as short a period of time as you can. That's why your doctor wants to scale back your dosage as quickly as possible. Typically what's done is that a higher dose is initiated in the beginning. I suspect the "40" part you mention above is the amount of milligrams (mg) of the pill you'll be taking. A 40mg prednisone pill is a fairly hefty dose. You'll probably start at 40 and then start scaling back on your dosage after that. Like 40mg daily for 2 weeks, and then 30mg for three weeks, and then 20mg for 3 weeks, and then 10mg for 4 weeks and so on down the line. This will continue tapering down until one of two things happen. First, it's possible that your AIH can actually go into remission as a consequence of taking the prednisone. You might taper off to zero prednisone and your AIH might just go on vacation for awhile, and perhaps permanently if you're lucky. But in the event the AIH does not go away (probably the more likely outcome), you'll reach a minimum "maintenance dose". From what I've read, 5mg is a fairly typical maintenance dose of prednisone for AIH. Then you'll probably be given an additional drug called immuran. Immuran boosts the effectiveness of prednisone and allows you to take less of it. This helps to minimize the bad side effects of prednisone and makes it less likely you'll experience long term problems from it. With immuran's help your prednisone dose can be extremely low, and meanwhile your AIH is fully managed. You could live happily ever after using this regimen and keep your liver safe from your overactive immune system. But yes, it usually is a long term and/or permanent treatment to the best of my knowledge (except for the permanent remission mentioned above).
Geri
AIH is where your immune system is too hyperactive, it's like a psycho with a shotgun goosed up on crack running around looking for trouble. The overexcited and overstimulated immune system actually mistakes your liver for some kind of foreign invader (like bacteria or viruses). This causes it to attack your liver, and when it attacks your liver it can cause very serious damage. Even more serious than what a hepatitis virus (be it hep A, B or C) can do, and even more serious than long time excessive alcohol use. It can destroy your liver in a relatively short period of time (compared to something like hep C or alcoholism which usually takes decades). So it's serious business and nothing to trifle with.
So what to do about it? Well, fortunately there's a pretty straightforward treatment for it, that to my knowledge is very effective and usually allows someone with AIH to live out a full healthy life (as long as they don't also have hep C or B). What is usually done is to prescribe a drug called prednisone. Prednisone is a steroidal drug (not the kind of steroid that makes big muscles) that suppresses your immune system. Normally you would never want to take a drug that suppresses your immune system because it makes you more likely to get sick. But in some cases it is appropriate, like in cases where someone has AIH for instance. Since your immune system is working overdrive for no good reason, it's ok to take a pill that will turn it down a few notches. And since prednisone turns down, or suppresses your immune system, it's called an "immunosuppressant." Fancy word, but just think "immune suppressed" and it's clear what it means.
Now the down side, unfortunately prednisone has its own negative side effects. It can cause various problems with your body if you take it for a long period of time, so ideally you'd want to take as little of it as possible for as short a period of time as you can. That's why your doctor wants to scale back your dosage as quickly as possible. Typically what's done is that a higher dose is initiated in the beginning. I suspect the "40" part you mention above is the amount of milligrams (mg) of the pill you'll be taking. A 40mg prednisone pill is a fairly hefty dose. You'll probably start at 40 and then start scaling back on your dosage after that. Like 40mg daily for 2 weeks, and then 30mg for three weeks, and then 20mg for 3 weeks, and then 10mg for 4 weeks and so on down the line. This will continue tapering down until one of two things happen. First, it's possible that your AIH can actually go into remission as a consequence of taking the prednisone. You might taper off to zero prednisone and your AIH might just go on vacation for awhile, and perhaps permanently if you're lucky. But in the event the AIH does not go away (probably the more likely outcome), you'll reach a minimum "maintenance dose". From what I've read, 5mg is a fairly typical maintenance dose of prednisone for AIH. Then you'll probably be given an additional drug called immuran. Immuran boosts the effectiveness of prednisone and allows you to take less of it. This helps to minimize the bad side effects of prednisone and makes it less likely you'll experience long term problems from it. With immuran's help your prednisone dose can be extremely low, and meanwhile your AIH is fully managed. You could live happily ever after using this regimen and keep your liver safe from your overactive immune system. But yes, it usually is a long term and/or permanent treatment to the best of my knowledge (except for the permanent remission mentioned above).
Geri
Hi I was dx with AIH in June of 2004. The two of you have been living with this longer than I. When I was dx I had never heard of AIH, so I did a lot of research. I started out on predisome and Imuran, now I take 100 mg of imuran. I have been in remission since 2005. I feel good most of the time and have been getting back my strength. I have a new normal and I can live with it. Most doctors say they do not know why we get AIH, that it is not inheirited. There is a very good all AIH site autoimmunehepatitis.co.uk
Please check it out.
In talking with other AIH folks I have learned. Some have 1 flare, take meds and are in remission. Some go into remission and then wean off drugs. In most cases they have a number of years and then have a flare and need meds again. Some say it is harder to go into remission with each flare. There are many different opinions about the management of AIH and it varies with the Doctor. AIH is controlable, not cureable. Most say it is not inheirted, but the tendenancy for auto immune disease is, like diabetes, arthritis, etc. Some like myself have tested active for Ebstein Barr Virus, but not everyone. Stress seems to play a role in auto immune disease. Also if you are of Nothern European descent. If you get 1 auto immune disease you will likely get another. I also have arthritis and osteopenia. You can live a normal life span, there are many people who have had AIH for 25 + years, you can have normal healthy babies. It is important to have regular blood work done. I keep a journal on myself and chart all my labs. I know there can be some side effects from the meds, and the labs can pick up on that.
Hope this helps, if I can answer any question please ask. Check out the UK site
Maari
Please check it out.
In talking with other AIH folks I have learned. Some have 1 flare, take meds and are in remission. Some go into remission and then wean off drugs. In most cases they have a number of years and then have a flare and need meds again. Some say it is harder to go into remission with each flare. There are many different opinions about the management of AIH and it varies with the Doctor. AIH is controlable, not cureable. Most say it is not inheirted, but the tendenancy for auto immune disease is, like diabetes, arthritis, etc. Some like myself have tested active for Ebstein Barr Virus, but not everyone. Stress seems to play a role in auto immune disease. Also if you are of Nothern European descent. If you get 1 auto immune disease you will likely get another. I also have arthritis and osteopenia. You can live a normal life span, there are many people who have had AIH for 25 + years, you can have normal healthy babies. It is important to have regular blood work done. I keep a journal on myself and chart all my labs. I know there can be some side effects from the meds, and the labs can pick up on that.
Hope this helps, if I can answer any question please ask. Check out the UK site
Maari
I too have AIH, i've had it for 14 years and have given birth to my first whos now 2 1/2 months old. My blood tests have come back high and some symptoms have reappeared. I too want to know the same questions you do. Also I'm breastfeeding and scared to go back on meds. I moved to a bigger city and neither my family dr or prenatal dr knew anything about this disease.
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