Autoimmune Hepatitis

[Mars24]

Hi to all.  I am new to this forum, infact this is the first time I have posted in any forum.    Apart from talking to my doctor I have now had the opportunity to speak to anyone who has the same disease.  I know support groups help but have never been game enough to try.  I hope I can communicate with those who are in this forum for support and if I can will offer  my support to anyone with this disease.

Here is a brief overview of my condition.  

Have read everyones' tags regarding this awful disease.  I was first diagnosed in 1992 at the age of 24  with AIH.  Was put on Prednisolone 50mg.  Over time this decreased to a maintenance level of 5 mg.  Inflammation though reoccurred after some time.  This happened on a number of occasions in which case the Prednisolone was increased anywhere between 30 - 40 mg depending on the degree of inflammation and would over weeks decrease it back to 5 mg.  I have been on 5 mg now for the past 3-4 years.  In about 1998 I was put on Imuran 100mg Inderal 40 mg.  I also take Aldactone to control the swelling on my legs although when I was on the high doses of Prednisolone the swelling was everywhere on my body especially my face (moon face lol)  I also take a calcium supplement because as you all probably know Prednisolone can cause osteoporosis.  Recently though (since august 2003) I suffered mental confusion known as hepatic encephalopathy.  This was treated with Lactulose.  I have had reoccurrences of this condition 3 times.   I am now at the stage where it  may occur at any time.  My gastroenterologist has referred me to a liver transplant specialist who now manages my condition.  I don't know whether I will eventually be having a liver transplant.  Its all a waiting game now.  I am due to see the specialist next week and he will probably order blood tests.  Lets hope that they stay positive.

Some advice from someone who has had the disease for a very long time, stay postitve.  The medical profession is discovering new medications, new ways or even cures for alot of medical conditions.  The latest one I heard on the news last week is that it has been discovered that the human skin stem cells can be used to grow organs.  It is currently being tested on mice and so far there has been a positive outcome.  This sounds very hopeful.  Anyone else heard anything on this news.

[CRNI]

Celiac Disease is only confirmed by an intestinal biopsy so your symptoms really need to be on the mark to invest in that. Meanwhile, you can look it up on the internet/check out a book from the library, etc. That is what I have done.

http://www.celiac.org/

[Mars24]

Thanks for the advice re Celiac Disease but I have been tested negative.  Yes you are right about autoimmune disorders being on the rise and that I too am convinced that the chemicals used today in the production of our foods are very toxic.  I have switched to organic produce.  Don't know if it helps but at least I think I am putting as natural a product into my body.

[9743km]

How do we get tested for celiacs disease?  And what exactly is that?  Is that the allergic to wheat, dairy, etc. My gastro Dr. sent me to a liver specialist who identified 100% that I have Autoimmune hep.  He has gotten it mostly under control at this point, but who would be the Dr. to test for celiacs?

[CRNI]

Along with conventional medicine you might get tested for Celiac Disease and if you have not...get quantitative Ig levels drawn. I know we (and myself included!) think there is a pill for everything but we need to look at what we are putting in our bodies. This world is so toxic and our bodies are reaching critical mass. Autoimmune diseases are on the rise and I am convinced it is greatly related to what we ingest as well as inhale.

[Mars24]

Great news.  Good luck with the new drug.  Keep me posted

[9743km]

Hi there.  I didn't have any symptoms in the beginning w/the toxins.  But my bilirubin numbers starting creeping up.  Then slowly but surely I started to tire out a little easier.  This all started in Sept.  Then the bilirubin numbers started really climbing, and by the beginning of Nov. I was so tired all the time.  So they ran a ton of tests.  Blood work along w/a doppler test in all my veins/arteries in my stomach, and a full ultra sound of my kidneys, liver, lungs, esophagus, and gall bladder.  They ran some toxin tests as well.  All the blood tests pointing to toxins were high.  They took me off the imuran effective thanksgiving day and by saturday I was a new person.  They told me it takes about a week for the imuran to run through the body.  So the only meds I'm on right now is prednisone.  Effective friday they are starting me on a new drug, similar to imuran, but my nurse told me for some reason people who can't tolerate imuran can tolerate this, so we shall see.  I feel so good right now, I am scared to go back.  My bilirubin number got as high as 9 and being off imuran 5 days my bilirubin was down to 3.  My Dr. couldn't believe how fast I reacted.  All my liver numbers and bilirubin are almost back to normal.  Thank you Lord!!!!

[Mars24]

Inderal also known as Propranolol is used to treat hypertension (high blood pressure), heart rhythm disorders, and circulatory conditions.  My liver dr says its helps keep the blood circulating freely.   Its not an anti inflammatory, Prednisone and Imuran are.

What are the toxins you are talking about and did you have any symptons with taking 200 mg of Imuran.

Stay positive.  I understand that the kids and your husband are a great inspiration as I have 3 kids of my own and a wonderful husband who love us and need us.

[9743km]

Hello there.  Funny you should bring up the stem scell research on growing your own liver.  A friend of mine has AIH like us, and she was telling me about this last week.  They said in about 10-20 years, we'll see this happen.  How exciting!!!!  I was diagnosed w/AIH in March, 2007.  Only a short time for me.  My gastro Dr. immediately sent me to a liver Dr. who has been w/me every step of the way.  He is fabolous.  Anyway, I started on 40 mg of prednisone and 100 mg of imuran.  I am currently on 12 mg of prednisone and 200 mg of imuran.  Though on Wed I was taken off of imuran.  They think it is causing toxins in my body.  So tomorrow I go for blood work, and if that is correct, they will be putting me on something other then imuran.  What is inderal?  I have not heard of this.  Is it an anti inflammation medication?  Being positive I believe is the key as well.  Every day I open my eyes and Thank God for the day.  I have 4 beautiful children that I have to keep pushing through for and a great husband.  I've had my up and down days, but the down days are becoming fewer!!!!