autoimmune hep

[jclev]

Hello, I was diagnosed with a very mild case of autoimmune hepatitus a little over a month ago. It was found during a routine physical after my baby was born (18 months ago) I am 32 yrs. old, the hepatitus was not caused by alcohol. I am being treated with a low dose of prednisone (5 mg. a day)which is being tappered off right now because my liver tests have returned to normal. My AST (SGOT) was 22 and ALT (SGPT) was 29. I am also taking Imuran (50 mgs) a day for probably the next 6 months when the doctor said they will try and take me off of it.
My question is that I am not an alcoholic but I do love to have a glass of wine on the weekends can I have one right now since my liver tests have returned to normal? I have not had any alcoholic beverages in months since this has been going on but I really miss it.
If I can't have a glass of wine now can I ever have one again? Does the alcohol cause the liver to be inflammed or what exactly does it do to my liver? Any advice in this area would be helpful---this has been really hard because I do not know anyone who has this or even heard of autoimmune hepatitus and it is very difficult to find out information about what alcohol does if your not an alcoholic. Thanks!

[Maari]

Hi jclev

I was diagnosised with AIH in June 2004, and my doctors all 3 of them said NO ALCOHOL , not even cough syrup. One dr did say that after several years of treatment maybe I could have a glass of wine once a year. But it was to soon to think about that.

As near as I can tell alcohol is so hard on the liver they don't want to take any chance of futher damage. And I don't want to be on the transplant list.

Hang in there. It sounds like you liver tests are improving and I'm sure you want to keep on, so my advice is no alcohol.

Good luck
Maari

[annainitaly]

hi jclev, welcome to this forum !

I don't have AIH but a similar autoimmune problem.

1) have you had a biopsy ? it is the only reliable way to know how mild your autoimmune hepatitis is. your blood tests are pretty fine, but I know by experience that those values may swing up and down a lot without any apparent cause (including what you eat or drink).

2) about the alcohol issue: I agree with maari. our problems are not triggered by alcohol, but alcohol DOES inflame ANY liver, even the healthiest one. your (our) liver is already inflamed by itself and we don't want to add anything that makes it worse. what my docs told me is the following: I am allowed ONE, LITTLE glass of wine TWICE A YEAR if I want: say, at new year's eve and at my birthday. I do so and I enjoy it. absolutely forget superalcoholic drinks or cocktails. sure, wine at weekends would NOT be tolerable: your (our) liver is very fragile. reading  people's posts here has helped me to find healthier habits than my usual, e.g.: using a juicer, drinking green and rooibos tea.  

3)just out of curiosity, how is your antibody profile ? I have primary (autoimmune) biliary cirrhosis (different from AIH) and I am positive for AMA, ANA, ASMA.

please keep posting here. we are a great little group of autoimmune patients, but also the "C heppers majority" here is wonderful, very well informed and supportive. all the best to you and your baby!
a.

[annainitaly]

maari,

just a quick hello!!!  hope things are ok over there...
here, I am  having a difficult time but I often think of you and your family.  sorry for being so quick now, but again, I promise I'll write in a short time.
(((hugs))) to you and your children.  
a.

[jclev]

Hi!
   Thank you so much for your advice. I have not had a liver biopsy, the doc. says he will do one if when I go off of the Imuran if the liver levels go back up because then I am looking at life long medicine. I was willing to have one because in all the literature I have read it says the only way to know if you even have AIH is to have a liver biopsy and I want to know so I am going to talk with him again at the next appt. about this.
My ANA is positive, it has been fluctuating, it was 640 last time and that was before the medication, I don't know what it is now that I have been on the meds, I would hope it has gone down. I do not know about the AMA or the ASMA, they have done sooooo much blood work on me and they usually only tell me about the test results that are bad, I am going to call and ask about them.
I have asked two different doctors (both gastroenterologists)  about my diet and if there are certain things that I should not eat and both have said there are no dietary resrictions besides no alcohol and then after reading all of this I find out that there are certain foods I should stay away from. Is this true?? Or is this for a different type of hepatitis. I do not have any other hepatitis, all my other tests were negative.
The reason I think the doctor thinks my case is mild is because I really did not have any symptoms and my blood tests were just a little abnormal meaning the Prothrombin Time (PTT) it was 13.7 and normal is up to 13, my Gamma Globin was 1.8 and normal is up to 1.6, then my INR was 1.3 normal is 2.0, so this is what he is going on along with the ANA results that were high.
Sometimes I get so confused by all of this I don't know what to think! You are right it is a very small group of people who have even heard of this and I think that makes it more difficult. My friends and family who are very social are having a hard time understanding what is going on, no one has ever heard of this!
Do you have children? I want to have another baby and the doc. has said that I will be able to, we are just waiting to get off of the meds and get everything stabiized or in remission I guess they call it. Thanks again, jclev

[annainitaly]

jclev

I dropped in here quickly, but for me it's too late tonight for a decent reply... I'll write to you during the weekend, sorry!
just want to say: don't be anxious, things seem to be under good control.

see you in a couple of days   :-)
a.

[transplant41904]

I was diagnosed with AutoImmune over 15 years ago.  I lived a very normal life, did not recieve alot of restrictions for activities or food.   The one item I have used continuously for every it seems is Actigall/Ursidol 300mg depending on weight.  my numbers where stable for many years and eventually went downhill.  I was transplanted last year.  From my experience, My life is more important than a glass of wine.   You had a baby 18 months ago, Don't you want to see your child grow up, have children become a grandparent.  IF you anwered YES to at least one of these thoughts then know that it is a small price to pay for a longer life.  Otherwise it sounds like you have everything else under control and doing the correct things.

[aaapattie]

Hi, I was diagnosed several years ago with AIH.  My interest in your post was that your levels stayed low for a long time.  I can't get my levels to stay low.  They will go to normal range for a couple of months and then spike.  This cycle repeats itself over and over.  Do you rest a lot?  Do you take Prednisone or Imuran?  Did you continue to work and do all normal activities and get your levels to stay normal?  I'm just trying to figure out what I'm doing wrong!  Thanks for any info you can provide.  Pattie

[Monadarling76]

Yes even I would like to know what u do different.i;ve AIH according to docs,haveNT had biopsy coz I can& as I'm on blood thinners n at risk of bleeding. I tk imuran 150mg n 5mg deltacortil. My sgpt spikes when I bring my drltacortil down. Currently it's 74 it keeps fluctuating n docs doesn't tell me anything. Help guys.

[aaapattie]

This site has WONDERFUL people.  I drop in just to read a lot because it was the first forum I found after diagnosed so these folks and their progress mean a lot to me.  But for mostly AIH info, you might want to try www.autoimmunehepatitis.co.uk
That is a VERY helpful site for us AIH'ers.
God Bless.
Pattie

[jclev]

Hi Pattie,
      I have only been living with AIH for a short time but my numbers did go down quickly and have stayed down, in the 20's, since I've been medicated. I started out on a higher dose of prednisone (20 mgs a day) and am now tappering off of that. I also take Imuran 50 mgs a day and will continue this until June. I have not changed anything else in my life except for no alcohol. I am a teacher so I was really worried about being around sick kids all the time but Thank God I have not been sick yet. I do try and get lots of sleep and work-out every day but that's part of my routine. I also take an all natural women's multi-vitamin every day. I hope this helped. jclev

[aaapattie]

Thanks for the info.  I'm the world's worse at staying at my workout.  All I do FOR SURE everyday is 2 miles on the bike.  The rest comes and goes.  Thanks again.  Pattie

[annainitaly]

hi jclev,
here I am again.
about antibodies: I believe that once we are positive, we

[jclev]

Hi,
    Thank you so much for your information. I have been taking an all natural vitamin that has iron in it and I am going to stop because I did not even think about this being hard on my liver. My doc. knows I take the vitamin so it really makes me upset that he has not told me to stop taking it or to take one without iron because iron is hard on the liver.
I figured the greasy stuff would not be good so I have cut that down to minimum but there again not because the doc. told me to but because I figured it out on my own.
I am so happy that I got in this forum and found people to write to, I have learned more here then from my doc. Maybe this is a sign that I need a new doc., someone who seems to know more about AIH. Thanks again for all of your time and thoughts! Take care, Julie

[danielledanielle]

I am so glad I found this site.  It was very comforting reading about other people going through this.  I was just diagnosed today with Autoimmune Hepatitus after having a big "flare up" recently that sent me to the hospital.  I got jaundice and had no idea what was going on with my body.  I have been having weird symptoms for years now that seemed to line up with my menstrual cycles and stress.  Prior to my period, is when I seemed to have symptoms of fatigue, naseau, throwing up,etc.  My periods are really wacky. Anyone else, have this problem? Also, last month I had joint pains in my hands.  I had to have my husband help me open all my sons baby food jars.  Is this related?  I am on the steriod prednisone and my levels are starting to go down.  I can't sleep at night. Is this normal?  Now that I have AIH, does this mean I am going to be on and off steriods for the rest of my life?  

[meki]

Danielle - this post is from 2005 but you could try posting a NEW post in the forum -- OK?

Most of the folks are HEPC based.

But we'll help out where we can.

I don't know much about AutoImmune Hep.

I'm willing to learn tho.

Some of your symptoms sound just like mine - both prior TX on TX and post TX Could be just liver related problem symptoms. Universal for the liver. LOL! What fun they have been... (OK - not really - but hey - a good attitude helps EVERYTHING)

Meki

[Kate287]

Hello i was  also diagnosed with auto amune hep when i had came back from a trip from Costa Rica.My body had turned all yellow and i looked like a scary monster!.I am only 17 and was just wondering if i will ever get back to normal. Will i be able to have children and have a couple drinks.

[Haidanatv]

I'm 32. This summer i was diagnosed with aih.Have any of you tried acupunture? I'v been doing it as well as medication and my doctor was amazed. I wasonly on the predisone for maybe 3 months. I now only take the azathioprine. Once a day. The levels are doing great. I take herbs that were were givin to me by my acupuntuirst and they help with appetite and energy. You sholud really try it.
Lots of love,
Adelita

[Pammy626]

Hi, someone else who is new to this. My 1st results came back really low so the Dr said to wait 6 months and get tested again and it might be alright, but lately I've been extra tired, itchy and spots have come out on my skin which are really itchy my husband thinks there just bites but you should see them i get one about once a month then they go away and now i have 3 of them do you think it's got to do with AIH or something else and should I go back to my dr to get re-tested?

[ruthie_p]

Go and get retested, its simple and no doctor should refuse an easy blood test. If they do, kick and scream untill they test you. It really maybe nothing but you're obviously worried.

I have been diagnosed for sometime now and have suffered few symptoms. I try not to think about it too much and live a normal life but it seems that at any hospital appointment the long term aspect is never disussed. Do any of you know/have experience of what we are all to expect? Seems a stupid question as I know people suffer to different degrees but are we talking constant the normal monitoring for years to come or more transplants in 10 years?

Like I say I try not to think about things too much but it does really worry me, especially as I watched my sister die from a very serious case of AIH at an early age and come from one of those (as mentioned by someone above) "rare case" families where we have AIH, Type 1 diabetes, Hypothyroidism (all of which I suffer from), Lupus, Crohn's Disease to name but a few!!!!!