Autoimmune Hepatitis

Posted over a year ago

I was given the fantastic news that my body doesn't like itself anymore. I don't know when it had a falling out, but all I can say is the course of action to remedy this disease is CRAZY. Taking meds that have more side effects and the restrictions on my daily life, because of the meds, no driving, no salt, no sugar, and little fat in my diet, very little sun. Bathing in skin moisturizer, moodiness, mental confusion, can't work, but expected to continue cooking for family, and cleaning. ... more »

Which I guess I have to do something with all this unspent energy, I can't sleep at night but the doc wants me to sleep 8 to 10 hours, ha ha.
Is there anyone out there that can tell me about their experience with Autoimmune or treatment, encouragement about the future?

Hoping to hear from you.
Seeare

4 Replies

Ecarolc - I too have recently been diagnosed with AIH. My dr has put me on prednisone and imuran. The imuran caused pancreatitis so I've been taken off of it. I still have a lot to learn, but I'll be glad to share with you. Carol

Posted over a year ago - Reply

Mctder - I also have AIH and MCTD(mixed connective tissue disease). I was diagnosed about 3yrs ago. Went the Prednisone route until complications got worse. Put on Imuran which made my liver functions much worse. I have been on Cellcept about 2 1/2 yrs now and my liver functions are finally normal. They have not been normal for about 35 yrs. I have to be on the Cellcept for a total of 5yrs. About 60% relapse and have to continue meds off and on through out lifetime. Yipee lucky me. Thank God we have insurance. Without it Cellcept runs over $950 a month. I have other health issues which may or may not be related to the auto immune diseases. I just began going to a new rheumatologist and I think I am going to like her a lot. The AIH is being treated by a gastroenterologist but I also need help with the arthritis and MCTD. I am much better than I was in 2002 when this all came to a head. I suffered pnuemonia for 2 1/2 months and nothing seemed to help. That is when the started to look at my immune system. BINGO!I have read a lot of information on the web and in books. I am educating my PC dr. If I can be of help, let me know. You can contact me thru email at. grandma.skro@hotmail.com Elaine

Posted over a year ago - Reply

Mahot222 - Hi Recently diagnosed w/AIH and am experiencing many of the wonderful (ha ha) side effects. One problem for me is trying which symptoms are serious and which ones will go away (maybe) I don't want to be whining to my gastro guy about every ache and pain but.... Since predisone has improved my liver function numbers he hopes to start me on Imuran soon but I have some other medical issues to resolve first (possible prostate cancer). Never a dull moment. Good luck to all!

Posted over a year ago - Reply

Jswink - Well is good to hear were still alive. My name is Jamie I'm a black female with 3 kiddos. My aih showed up after having. My last boy. It took awhile for my doc to catch it. The thing is by the time I found out my liver was gone so I don't take any meds it would do more harm then good. God made my body a portosystematic shunt on its own and my blood bypasses my liver and goes straight to the heart. Thank-you Jesus. The bypass happened after being exposed to TB and with my immune system down it spread to my brain causes 5 masses in my brain. I went into commas the longest was 8 days my liver completely shut down docs said to my wonderful hubby I had 4 to 5 months to live. That was a year ago. Thank u Jesus. I am great now I prayed that I wanted to be better before the school year started so i could take my daughter to kindergarten. The lord was faithful it was his will. I'm 26 and mu side affects are no sleep at night. But I'm alive and there are people in the word way worse off so a little sad about aih but thankful it's only aih. :)

Posted over a year ago - Reply

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