Just Diagnosed...any Positive Stories Out There?

Hi Everyone,
I just received a confirmed diagnosis today after my liver enzymes went to 1150 and am jaundiced. I was told about 2 years ago that this was possible, but my liver tests were normal the last time I took them in May 2011. I wish I had gone back sooner for more blood work, but I think I was in denial after hearing the initial news that this would happen. But I don't think I would have been treated anyway since I had no symptoms until now. Pain, fatigue and the jaundice. I am waiting to see a specialist and to get my biopsy. I am reading so many horror stories and I feel for you all who are going through this. I have been a mess for days crying and thinking about my young children and if I will live long enough to be with them for the major life events. I am not on meds yet, but will be next week. The prednisone stories are awful and scare me but I will deal with all that if I know I can live to be with my girls. Does anyone have any positive stories out there? Is anyone in remission and feeling good? Is anyone still working and functioning like a normal person? Thanks for any replies.
lizbringwood lizbringwood
4 Responses Feb 10, 2012

My grandmother lived a very long life dying of this disease at the age of 86.. and never being diagnosed until she was dying from it. She drank on rare occasions and as far as I can see, and did not eat a very nutritious diet.

I am taking care to feed my body the proper nutrition it needs (thank you documentaries: Food Matters, Hungry for Change, and Fat, Sick, and Nearly Dead). For the most part I am not bothered by my liver issue, but it does flare up from time to time after I drink alcohol. So I have been refraining from doing so. I am not taking the immune suppressant drug (6-mercaptopurine) that I was recommended to take for life. I feel the risk it brings ( it can increase your risk of cancer) is not worth it given that I seem to be living a pretty "normal" life without it.

I understand about the fear of dying... I went through all that too. I hope you are getting on well now :)

I was diagnosed at 24. My enzymes at first were 3000+! I did a stint with prednisone (about 3 months) and I am fine. I live a normal life! I eat normal and drink alcohol in moderation! I am completely off medicine and have been for a year and a half (the doctor had me on some stuff that protects your liver but is really to prevent kidney stones). I just watch it. I dont have a drink if I have to take any meds like ibuprofen (no Tylenol), and I listen to my body. If i am tired, I rest. If I am hungry, I eat. I try and eat healthy and exercise. Don't get me wrong, it took a few years to finally feel like myself again but you will get there! Things will be ok!!!! If you want to talk give me your email! I will be happy to share some stories and try and help answer some questions!<br />
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Liz,<br />
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I am happy to say that my story is positive. I have been in remission, and "functioning like a normal person," pretty much since being diagnosed.<br />
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I am a 24 years old, diagnosed with AIH when I was 20 with very high enzyme numbers - near fatal. I was jaundice, low weight, fatigued. I was started on high dose of Prednisone and Azathioprine, which worked. In about 4-6 months (I forget), I had normal liver enzymes, normal health. I got off Prednisone. I have been taking 100mg of Azathioprine daily to this day. I have had completely normal liver enyzmes since. I feel fine. Sometimes I ache a little - around the rib cage and abdomen. I have some GI problems - stomach, esophogus, throat - which AIH patients are more at-risk to have (though my specialist thinks mine are unrelated to my disease or the medicine). Also, Azathioprine is an immune-suppressor, so you may find it more difficult to heal things, like a case of the common cold, or a cut. Personally, I haven't noticed any difference. I have even have drunk 1-2 beers a couple times a month (up until recently), which my specialist thinks is fine as long as I feel well and my blood tests don't change (many agree this is a bad idea though - no alcohol and a low-protein, anti-inflammatory diet is encouraged by some as possibly preventative for further scaring of the liver, and for general health). <br />
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From what I have read and heard from others, this disease seems sort of personalized. It seems to range in severity and such. The drugs work for a lot of people, and if they don't, know that there are other drugs. Know that if the drugs work, statistically, an average lifespan is expected. Autoimmune diseases and disorders are mysterious, and autoimmune patients are more prone to other illnesses, but in the last 10 years much research has broken ground, and that's a piece of good news for medicine.<br />
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I don't know if I will remain as fortunate as I have, but I have read, and my specialist has agreed, it is unlikely that I will not live a normal life or need a transplant as long as I stay on the medicine. Though, the only way to know the state of one's liver for certain is a biopsy.<br />
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Let us know how you are feeling!<br />
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Support from Seattle, USA,<br />
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Hi Liz;<br />
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I know exactly how you feel! It was an extreme shock for me. You go through such a gambit of emotions. I am on meds but with rest I am ok. You have to live each day at a time. Some days are good and some are not so good. When your liver is not functioning properly, Your hormones are out of whack. I was on prednisone. It is a wonder drug. It will alleviate most symptoms immediately. For me, prednisone makes me crazy. I am on Budesinide. I am also on the immunosuppresants Cellcepht and Prograff. Working was too much for me. Now that I am home, I am better. With this disease you need to rest when you are tired. You cannot push yourself or esle you will have a flare up. You will learn how to balance. I still have days that make me angry that I have this disease. But, I am here with my boys. That's what counts the most.

Hi Linda,
Thank you for writing to me. I have been put on budesonide and azathioprine. I had my biopsy yesterday...that was an experience. I found a great forum in the UK and most people are so kind and positive that I feel better than I did after reading the posts here. I am fortunate to work from home, although it is a high stress job and I may not be able to continue if it causes me to flare up. I am tryi g to stay positive and hope for the best. I need to be strong for my little girls and I need to be around for them. I hope you're having more good days than bad.