autoimmune hepatitis

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honeyann
New Member


Date Joined Feb 2008
Total Posts : 1
   Posted 2/17/2008 5:58 AM (GMT -7)   
confused  Hi have autoimmune hepatitis and am very scared. going to the doctor for more blood tests next week,I am not on meds yet but was told I will have to take them,could someone give me some insite on this,I feel like I am all alone.thanks honeyann

Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 2/17/2008 8:40 AM (GMT -7)   
Hello HoneyAnn and welcome to Healingwell.
First of all you are not alone now. We have a number of people here with Autoimmune Hepatitis that can answer some of your questions.
Read over some of our old posts about it. Get educated before you go back to the doctor so that you can help make a proper plan of action as to what's best for you to fight this disease.
This forum is one of the best for information and support. Keep coming back when ever you want. We will be here to help you through this scary disease.

Take care ..........thoughts and prayers.
Pink Grandma
Forum moderator-Hepatitis

When the going gets tough....the tough get going! Don't always know where I going but I get there anyways.


Butterflythree
Veteran Member


Date Joined Oct 2007
Total Posts : 954
   Posted 2/17/2008 10:41 AM (GMT -7)   
Hi Honeyann, I justed wanted to take the time to welcome you to the forum. You have come to the right place for help. There are many people here that may be able to answer your questions. My husband suffers from hep c and cirrhosis, so I am not very educated when it comes to AIH. I have seen several posts here from people that are dealing with the same disease.

Know that you are not alone. There are people here that care, and God is with you.
Butterflythree
 
There is always hope!


frustrated_n_wv
Regular Member


Date Joined Aug 2006
Total Posts : 469
   Posted 2/18/2008 5:23 AM (GMT -7)   
Hi Honeyann and Welcome to the forum

First of all I want you to know that you are not alone here. This is a wonderul place for information and unconditional support. I too was really frightened when I was first told I had this disease. At the time I had never heard of anything like this or what it actually meant for the long term. I googled and read everything I could get my hands on, unfortunately unlike some of the more common liver liseases there just really isn't a lot of infor out there. I found it helpful though to read things so I could gather questions for my doctor. I also found it helpful to write questions down as I had them so I could take them to appointments with me.

As to your questions regarding medications I started out orginally on Urso, which is a syntheytic bile salt I beleve, to aide in reducing my alkaline phosphate levels. This med which I still take has no real side effects and can be takin long term. I also was started on high doses of prednisone to reduce the inflamation and as a general immune suppressant. Generally prednisone is reduced to a mantance dosage (mine is 10mg a day currently), Prednisone has numerous side effects but can truly be a life saving med. It helped me tremendously with the extreme fatigue I was experiencing and gave me back part of my "normal" life. Aftter several months of being on my maintance dosage of pred, I was given Imuran which is a more specific immune suppressant. Initially I did not tolerate the imuran well and was taken off of it for several months. However as my enzymes became more stable and me and my hepatologist both were seeing more of the side effects of the pred, he decided we should try the imuran again. This time I have had no trouble tolerating it and my enzymes have remained stable and nearly in the normal range. I also take lasix and aldactone for fluid retention. Honestly when I look at some of the other people here and all the medictions that they have to take for there liver problems, I feel fortunate. The only inconvience so far is that with the imuan you must have monthly blood work as it has a tendency to deplete some of minerals (potassium I know is one) that your body needs.

There are seveal people on this forum that have AIH and have successfully lived with the disease for many years. As scary as this all seems right now, there is hope that it is managable if not curable. Educate yourself so that you can communicate with your doctors. If you do not have a hepatologist now you should talk to your doctor about referrring you to one that has experience with AIH. I hope this was helpful to you.

My thoughts and prayers are with you as you begin this journey.

Lucy
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