Autoimmune Hepatitis

[KSLady]

Has anyone on this board ever been diagnosed with Autoimmune Hepatitis, or know someone who has the same? Hepatitis literally means swelling of the liver, therefore my diagnosis means that my immune system is attacking my liver. I would be interested to hear from anyone who might have any information on this disease!
KSLady:

[GIGI69]

with the diagnosis but I don't know anything else. She is a friend of a friend. I have no idea what her treatment plan is or, what sx she has, or what her outlook is like. Sorry. Just wanted you to know that there is someone else in the world with that dx :)

[Joanne C]

[QUOTE=KSLady;187067] Has anyone on this board ever been diagnosed with Autoimmune Hepatitis, or know someone who has the same? Hi, I just joined this group. I can help you on the AIH. I am the Moderator for a support group for AIHers and other autoimmune liver diseases, such as PBC, and PSC. LiverSupport-L is a yahoo group AIH is an inflamation of the liver and I imagine your doctor (a liver specialist is needed) will or has put you on prednisone.I have PBC and am post transplant as of 12/2003. I am here as I have neuropathy and fibro, and assorted autoimmune diseases. Joanne C.

[beenthere]

Has anyone on this board ever been diagnosed with Autoimmune Hepatitis, or know someone who has the same? Hepatitis literally means swelling of the liver, therefore my diagnosis means that my immune system is attacking my liver. I would be interested to hear from anyone who might have any information on this disease!
KSLady:

I have an autoimmune disease and they tested me for Hepatitis but it was negative. I know that strawberries help with liver cleansing. That's all I can help you with.

[annie63]

Has anyone on this board ever been diagnosed with Autoimmune Hepatitis, or know someone who has the same? Hepatitis literally means swelling of the liver, therefore my diagnosis means that my immune system is attacking my liver. I would be interested to hear from anyone who might have any information on this disease!
KSLady:

Hi Kslady,
I was diagnosed 5 years ago with AIH. Believe me it is a long and uphill road to find treatment. It is swelling of the liver and it is the attack of your own immune system on your liver. I am just now being put back on steriods along with azathioprine to get me to a new Normal lft rating. Two weeks ago I had a liver biopsy my second in 5 years. It showed swelling of my liver even though my lft's are normal. SO we are doing a different treatment and hopefully will put me at a new normal. Crazy isn't it, just can't seem to find a right place with this disease. Please make sure you have a great primary Dr. and a great Gastro dr. I also see the top hepatology Dr at Brigham and Women's in BOston to be sure that all we are doing is good for me. Be well and I will try to the best of my ability to answer any questions you might have. Hope to hear from you.
Annie:D

[tibby]

Has anyone on this board ever been diagnosed with Autoimmune Hepatitis, or know someone who has the same? Hepatitis literally means swelling of the liver, therefore my diagnosis means that my immune system is attacking my liver. I would be interested to hear from anyone who might have any information on this disease!
KSLady:

Hi - I have autoimmune hep and was diagnosed 11 years ago. I have never met or corresponded to any persons with this problem. What do you want to know. ? Do you want to correspond?::

[u smile]

Hi - I have autoimmune hep and was diagnosed 11 years ago. I have never met or corresponded to any persons with this problem. What do you want to know. ? Do you want to correspond?::

yes, I would like to correspond. Have you ever had a case of shingles? My husband was treated for Cll and although the treatment put the chronic leukemia in remission it caused major issues with his liver. Liver toxicity as shown in the biopsy a year ago. Everything went back to normal until recently, approx. a month or so ago his liver and spleen enlarged again and although the Cll is still in remission his liver enzymes are out of whack. going along with this, he has shingles, and fluid in his abdomen, legs and feet. I recently read an article about someone with chicken pox (the reactivated dormant virus that causes shingles) that was diagnosed with Autoimmune hep and treated with prednisone and responded beautifully over a course of months. The liver swelling went down and enzymes normalized. Logically seems that the shingles virus could be connected to my husbands liver issues. He was not taking any medications, does not drink and so something seems to have caused the liver to whack out again. Does this seem logical...I know very little about autoimmune hep but the article about the chicken pox virus peaked my interest!

[msdrea83]

i was dx with autoimmune hep. when i was about 16 months old, along with UC and cirrohsis of the liver. the UC is non existant now due to a full colectomy, but now are thinking it was crohn's all a long... lucky me... along with all those i've had rsd for almost 6 years now.

[FluteMaker]

something for you guys to look into and keep an eye on.... theres a Dr Berkson out of new mexico who has been getting promising results treating hep-c with LDN and ALA.Ian Zagon,a researcher at penn state has been working with the same stuff treating UC and chrons and getting some real promising results too.

search mercola.com for brekson and ldn and ala

[sandy985]

this looks like an old post but if you are still interested i was diagnosed with this when i was 14. im am 25 now. i really dont know to much about the the disease except for what is found online. i havent been on medication for a few years now, and my liver functions have been fine. but i ve recently been more concerned and im trying to learn more about it before i got back to the doctor

[Koala77]

You're quite right Sandy985, this is an old thread and few of the posters still active, but hopefully by bumping it up again, you will get renewed interest in the topic and therefore answers to some of your concerns.

Welcome to NeuroTalk. It's good to have you with us.

[Preslie55]

Has anyone on this board ever been diagnosed with Autoimmune Hepatitis, or know someone who has the same? Hepatitis literally means swelling of the liver, therefore my diagnosis means that my immune system is attacking my liver. I would be interested to hear from anyone who might have any information on this disease!
KSLady:

Yes, I have had Autoimmune Hepatitis for 12 years now. I was diagnosed when I was 6 years old and I'm now 18. Over the passed few months it has gotten really bad for some reason, and the doctors aren't sure why, or how. They ended doing two liver biopsies in feb and found some scarring, but not too much, which is good. I was also diagnosed with Hypothyroidism and Autoimmune Anemia is feb as well.
The disease is categorized in Rare Diseases. The immune systems starts attacking healthy liver cells and killing them. The problem with that is, there is no cure, there is only treatment. For many years, treatment works, but when you are constantly taking the same meds over and over, your body becomes immune to them, therefore, they stop working, which is basically my case. lol

[pabb]

Yes, I have had Autoimmune Hepatitis for 12 years now. I was diagnosed when I was 6 years old and I'm now 18. Over the passed few months it has gotten really bad for some reason, and the doctors aren't sure why, or how. They ended doing two liver biopsies in feb and found some scarring, but not too much, which is good. I was also diagnosed with Hypothyroidism and Autoimmune Anemia is feb as well.
The disease is categorized in Rare Diseases. The immune systems starts attacking healthy liver cells and killing them. The problem with that is, there is no cure, there is only treatment. For many years, treatment works, but when you are constantly taking the same meds over and over, your body becomes immune to them, therefore, they stop working, which is basically my case. lol
have you been tested for celiac disease and/or tried a gluten free diet?

[samyjo]

Hello, ty for allowing me to join. I was just diagnosed with Auto Immune Hepatitis 3 months ago. When my gastro told me I was numb and the words were not registering, I have read up on the disorder and really don't understand the time frame on what to expect.

Right now I am only on 400IU vitamin E, i really don't know what to expect, help please, I am 34.

Samyjo

[MAC 2012]

Has anyone on this board ever been diagnosed with Autoimmune Hepatitis, or know someone who has the same? Hepatitis literally means swelling of the liver, therefore my diagnosis means that my immune system is attacking my liver. I would be interested to hear from anyone who might have any information on this disease!
KSLady:

I have hep c i am not taking treatments 4 it cause they say they make u realy sick and depressed. I already have a muscle disease called POLYMYOSITIS my immune system is attacking itself . . talk 2 your DR and see what they say bout the treatments they say it realy works i jus have 2 much going on with my body at this time 2 take treatment . I wish u the best !