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Auto-Immune Liver Disease,....question

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Hepatitis
how long have you lived with AIH?
over 10 years - 0.0% - 0 votes
over 20 years - 100.0% - 1 votes
over 30 years - 0.0% - 0 votes
over 40 years - 0.0% - 0 votes
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Posted 11/3/2006 7:59 PM (GMT 0)
I just joined this community and wondered how long everyone who has AIH has had it? I was diagnosed eight years ago, was in remission for 7 1/2 and this year my enzymes went up to 1000 and 768. I firmly believe that stress is the trigger for this disease in me. For 8 years I tracked my enzymes and every time i was going through something stress, mainly deaths in the family, my enzymes went out of normal range. However, for the past 14 months I have had a new boss and he's a nightmare....after several months my enzymes went wild. The specialist disagrees about stress being the trigger but I think stress can do anything and he doesn't have an  alternate explanation. I also think I had it for about 3 years before I jaundiced and was tested for it.

So, what is the longest a person has lived with this disease, without having a liver transplant? Anybody?

Astrid

Posted 11/4/2006 7:28 AM (GMT 0)
Hello Ingrid,
WElcome to the Forum. I have had AIH since May 2004, but maybe 15 - 20 years prior to that without knowing it. The reason the doctor thinks I may have had it for that long is the amount of damage to my liver. I have cirrhosis.

I haven't got time right now to check dates of enzyme elevations with stressful times, and I have had a few. But I will check later and let you know. My sister died in January this year from another autoimmune disease. Her husband feels her disease was worsened by stress. She had a drug dependent son and there were some business financial worries. She died from Wegener's Granulomatosis, a vascular AI disease.

I'll post again in the next few days.
Marg
Posted 11/4/2006 8:59 AM (GMT 0)
Astrid:
Welcome to this forum

I have only been recently diagnosised with AIH, this past April 2006. However, they believe I have had it for at least five years prior. I too believe that stress plays a part in this disesase as it does many others. Nearly six years ago in a three month period mymother passed away, our long time family dog passed, and the agency I worked for was bought out and we were all transfered to another agency. My new boss there was a nightmare and the agency as a whole was totally unprepared to deal a totally new program. Shortly after this I began experiencing health problems that I now realize are associated with AIH. (fatigue, joint pain, vision problems). I also have read some articles on autoimmue disorders that talk about the part that stress plays in causeing recurrances of symtoms and worsening the condition. I will post them if possible if I can find the specific ones.

Please keep up posted on your progress with remission.

Lucy
Posted 11/8/2006 10:44 AM (GMT 0)
Astrid,
Hello, I was diagnosed with AIH early this year, in March. I had been sick for 3-4 years with fatigue, joint pain, skin lesions, elevated lft's, and nausea. My MD kept giving me pain plls for the arthritis, sent me to a dermatologist, but didn't address the high liver enzymes except to say, we will watch them. It's probably your anti depressant causing it, but offered nothing to do about it. I continued to get worse and could hardly function from fatigue. Also, he kept telling me that the fatigue was depression of post menapasual. I knew better.
I changed MD's early this year. She immediatly sent me to a GI., he got a biopsy report that was very troubling, (his words) I have fibrosis that is very close to cirrhosis, am on prednsone. The ltf's are under control. But I have great concern about my life and quality of it, as I'm sure we all do. I also have Psoriatic Arithritis, another autoimmune disease.
I think we all deserve a medal for living with and dealing with all this. I for one want to pat everyone on the back, including myself for helping ourselve and others on here. It's a wonderful way of support and education.

Now, about the stress. I do believe it is a factor in relapes, definately, and possibly in bringing it on. From what I have read and researched, it just sometimes happens. Were/are you on any medicaiton when the relapse occured. Where you getting regular tests done? Did you feel it comng on? Just wondereing.. What kind of treatement has your doctor started you on?
What stage are you in? Sorry for all the questions. just curious and am wanting to help all I can.

A woman in my yahoo group that has lived with AIH for 20 years. That give me a lot of hope, even though most of what I read points to me going into cirrhosis, even with agressive treatment. I know of some very good research sites if you want me to post them for you. I'll give you all the support I can. I am sure you are horrified that after all these years, you have relapsed. But, you realize that is usually not the case. You were bessed with a remission for so many years. Did the doctor keep you on something for maintenance?

Btw, I lost a total of 3 family members and 2 close friend within an 18 month period in the late 90's which included my husband and mother. I also had 3 surgeries in 3 years during 2002-2005. Stress is definately a major player in AIH. I believe that it can be with any autoimmune disease.

I hope this has helped.

Healing and Wellness to all,

Judy



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Posted 11/12/2006 7:08 AM (GMT 0)
Hello Astrid,
My apologies for calling you Ingrid in my earlier post.

Judy, Can you give me particulars about your Yahoo group?

I have not realised my liver function was declining each time there was an elevation of the LFT's when my medication was tapering. I got a real surprise when the liver specialist phoned to increas the meds. I can honestly say I felt just the same. That's the problem with the liver. Until you are almost in liver failure, you don't feel too bad.

Take care everyone.
Marg
Posted 11/16/2006 5:48 PM (GMT 0)
I was recently diagnosed with AIH. I also have Addison's Disease, Hypo-Thyroid and three years ago open heart surgery for an Anomalous Coronary Artery.

I am only 38 years old and a single mother. My doctor is frustrating because she hasn't actually told me what stage I am in. She hasn't even called me back as to whether or not she can get me into the Mayo Clinic. Am I scared? Yes, I am a single mother with no help from absentee father and I don't even know how long I will live with this. Is there any food I should not be eating or should be eating? I am already on Steroid therapy due to my Addison's Disease (gotta love those side effects ). People tell me that I am jaundiced and I felt sick to my stomach a lot and I always felt as though I had a really bad gas pain. Is this normal? The fatigue was normal to me as that is a side effect of the other diseases that I have.

I am so glad to know that you all are out there. Please HELP!!! sad
Posted 11/27/2006 2:19 AM (GMT 0)
Hi all! I have a quick question. Is it OK to get a Tetanus shot if you have AIH? (Got a fish hook in my finger. No big deal, but from what I have read, I need a Tetanus shot)

I havent been here in awhile. Hope you are all doing well.

Blessings, Pat
Posted 11/27/2006 2:19 AM (GMT 0)
Hi all! I have a quick question. Is it OK to get a Tetanus shot if you have AIH? (Got a fish hook in my finger. No big deal, but from what I have read, I need a Tetanus shot)

I havent been here in awhile. Hope you are all doing well.

Blessings, Pat
Posted Today 10:42 AM (GMT 0)
Hi Pat,
I'm not sure about the Tetanus shot. Ask your heptologist about it.

Steviejo,
No alcohol is the first rule.
After that i think it's important not to stress the liver with too much fatty food. Someone here suggested not to eat too much carrots but my heptologist laughed at that one. Said the beta carotene in carrots is good for you. The liver cleansing diet suggests lemon juice each morning, followed by carrot and celery juice (with parsley) and for the first two weeks no dairy products at all.

I've had the lemon juice and carrot / celery juice each morning for about the last twelve months. And I have had about five drinks of alcohol in the past two and a half years - both son's weddings and the birth of my first grand child - I try to eat healthy. but I'm not always successful. Streoids don't help with the weight gain - and then I feel bad about gaining weight and eat something else.

Check back through other posts about diet and the liver. Judy posted something a while back. And talk to your doctor. Actually I'd look for another doctor - one who I was comfortable with.

Look into alternative medicine. You may have read other posts of mine about Chinese acupuncture and herbs. Since having this treatment I haven't looked back. Sadly, it has also caused my purse to be constantly empty.

Hope my ramblings have helped. I sometimes feel like an imposter on this site. So many sick people and I'm feeling so well.

Take care.
Marg
Posted 12/20/2006 7:53 PM (GMT 0)
Hi,
Been a while since I've been here. I will post a link for the yahoo support groups I belong to for AIH and liver disease.
Blessings, wellness, and Holiday gretings to all. I will write more later.

Judy http://health.groups.yahoo.com/group/Autoimmune_Hepatitis/

http://health.groups.yahoo.com/group/AIHep/
Posted 12/20/2006 7:58 PM (GMT 0)
Astrid,
I don't know how long I have had it but I suspect for some time with the damage it has done. It has destroyed about 70% of my liver. I was dx in April of this year after 3-4 years of elevated liver enzymes and extreme fatigue.
I have not posted in some time due to depression which I associate with a withdrawl from prednsione and just not feeling well enough to post.

You have joined a great support place here. There are great people who love and encourage one another.

Bye for now.

Judy
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