Hi, What dose is your pill/steroid that you are taking? Are you on any other meds for your liver?
Every person with AIH is different. If the doctor did all those tests and have diagnosed you with no damage to your liver, that is very, very good news. Can you tell me what your symptoms were that led you to see a doctor? How long ago did this start?
I was never put on a special diet. The only food I was told to avoid was asparagus at the time I was first diagnosed. I don't know if that was because of the inflamed liver, or a reaction with the meds. I was never told not to exercise. The biggest problem for almost all of us with AIH is the extreme fatigue and tiredness. I sleep 10 hours per night. Some days I am just plain lazy, but the next day I am back to normal. That might have to do with lack of sleep/rest the night before.
I do occasionally drink. Usually I was always the designated driver because my husband is the one that can't pass up a dozen or more beers. So over the years I just didn't get many opportunities to drink or party. Believe me, when I was the one to get the liver disease I was. . . umm, surprised and ticked off. So don't give up on the thought of not being able to ever drink again. If you were a big drinker you may decide with your doctor to give it up.
I don't know if this group allows us to give out our email addresses, but here is mine if they don't block it. Cindywyliemcnally@aol.com Please keep me postedView Thread
How long have you been seeing your doctor for this liver problem? What tests have been run on you? Hospital treatment or as an out patient? Did your doctor explain that the steroids will bring down the inflamation and help reduce your pain? The side effects aren't pretty, but they aren't permanent either. It was so worth it to me.
I have been one of the lucky ones....Im in remission. When I was diagnosed 10 years ago, not too many hospitals knew how to treat AIH. I live in Michigan and my doctor placed calls to Mayo Clinic, California and New York to find out the treatments to try. There wasn't the information that they have now...or any support groups.
Being on meds is not the end of your life...they will help your body correct the mistakes it is going through. Becoming depressed is natural. You just suffered a shock...your healthy body attacked your liver and everything is wrong in your world because of it.
You may not live to 90 like your mom...but you may have a better and brighter futureView Thread
Thank you Irma, I am glad I can help you overcome some of your fears. Knowledge about AIH is something I didn't have, or support. So I know how important it is to have others with answers and hope for us.
Keep asking questions whenever something bothers you Irma. There will always be at least one person here that will help with answers for you. This is a good group of people.
When/if the day comes when my remission ends I know I will be here with my questions, and needing prayers and support from our AIH family.
I do have some scarring. My liver is fine. I was probably on medication for 3 years. U of Michigan felt I should be weaned off prednisone first, but my doctor and I felt the Imuran would be best to wean off first.
When I finally was off both meds I started pushing my bloodwork back by a few weeks, and then a couple of months until I was only going a few times a year. Finally I am going only once a year for bloodwork...with my doctor's approval.View Thread
I have not been on any medications in many years. So there is hope for you too. I think your scores are coming down real good. The speed which they come down is not important...
Has your doctor talked about a biopsy? Was a CT or MRI done? Maybe they don't do them now.
I don't know how to lower your LFT scores Victoria. The only thing I remember being told was not to eat asparagrass...but that could have been because of the meds and not anything to do with the liver.
Keep me posted. And if I can answer any more questions I am here.View Thread
Hello Victoria, My knowledge of AIH is 10 years old so I don't have any current information I can give you. I have been in remission almost 7 years. I didn't keep any records after being released from the hospital...not many cases of AIH back then. When I was released from the hospital I was on 20mg of Prednisone and 50mg of Purinethol [6-MP> My AST was 125 and AFT 145. I had an allergic reaction to the 6-MP and was put on Imuran...wish I could tell you the dose but I can't. All my records were sent to U of Michigan, except for the return stay at the hospital when I had the allergic reaction. My most recent biopsy of the liver was done 2 years ago while I was in the hospital to have my gall bladder removed...no changes. It has been a journey from being made ready to be put on a transplant list, to being in remission...but with AIH anything can happen.
So tell me about yourself Victoria. How did the doctor find your AIH? Did they do a biopsy on you? Has your dose of prednisone or azathioprine been lowered? Have your AST and ALT scores been coming down?
Wait a minute, you said your LFT scores. Are you talking about your lungs?
That is true...but both my husband and I only have one autoimmune disease while our daughter has 3. And all of us were diagnosed 10 years ago. Will keep my fingers crossed...AIH is enough to live with. CindyView Thread
Hello, Just knowing she has had the biopsy and it didn't show any cirrhosis is very good news. They have probably started her on prednisone and either Imuran or another drug.
When I was diagnosed I was in the hospital for about 10 days.
Can you tell us how long she has been in the hospital? Her age? Do you know what drugs they have put her on? And how long has she had the symptoms?
I would tell her about some of us on this web site. Every case is different but it sounds to me that the AIH was caught in the early stages, and that is great news.
They know a lot more today than they did 10 years ago. Let her know that remission does happen, so tell her to stay positive. And if she has questions, someone here will have answers for her. Knowing as much as you/she can about this disease will keep her informed about symptoms, new medications and allergic reactions. When she feels up to it, have her join this site. We will be happy to help her understand more about living with AIH.