Hi Heather, When filling out medical forms put down that you have autoimmune hepatitis. It is chronic and that means you will have this for the rest of your life.
The doctor you should be seeing for treatment is the doctor that did your biopsy. YOur regular doctor is not experienced in treating AIH. The prednisone is bringing down your inflamation. You will be weaned off that slowly. Any side effects will go away too. As you are weaned off the prednisone you will start sleeping better at night.
When I was diagnosed with AIH 8 years ago I was put on Imuran and prednisone at the same time. Today they must be treating it differently.
No one knows why any of us got AIH. The best guess I have heard is that something stressful happened in your life, or trauma to your body caused your immune system to attack.
There are many autoimmune diseases: rheumatoid arthritis, chron's disease, MS, and many others. They really are common. And you can live with them Heather!!!
Right now everything is new and frightening. Your mind and body is trying to adjust to this. You need to rest when you feel the need. Take things slow for just a little while Heather. Trust that your life will get back to normal when the time is right.
I have been in remission for probably 5 years now. I take no medications. My bloodwork is only done twice a year now.
Every case is different. But right now while you are in the early stages, you need to keep a positive out look, let your body tell you when it is tired and listen to it. Let your familyl know that just because you don't look sick, you are still ill and need time to heal. DON'T OVER DO IT Heather! The healing of your body takes time. And that amount of time is different for everyone. YOU came close to needing a liver transplant...think about that. Realize that you have to take care of YOU right now.
We are here to help you get through this Heather. 8 years ago there was no one out there for me. No support groups and very little information on the internet. My doctor called all over the country for information to treat my liver. I don't think he had ever seen a case of AIH before.
Ask any questions and we will be here for you.
Opening my Bible and reading it gave me strength and hope when I felt alone.
If your family has questions, we can help them too Heather.
I think it is the prednisone that deletes the calcium in the bones. I remember having to take Actenol daily while I was on it. Now that the dose has been increased for awhile with both meds, how are you feeling? CindyView Thread
Hi, You are the first person to mention MP6...the sister drug of Imuran. I had a severe allergic reaction to MP6, but the Imuran worked great for me. It just shows that finding the right medication combinations for each one of us, is not as easy as we might have thought. When you were weaned off the prednisone, were you on a lower dose of the MP6 or have you always been at 100mg? CindyView Thread
Hi Steph, I'm glad you found our support group. And super glad you have been doing so good these past 20 years. Each person on here has their own story, and yours gives so much hope, and a very positive message.
I don't think you will get life insurance unless you pay the very top dollar. We took extra insurance out on my husband after he was diagnosed with rheumatoid arthritis. It is outrageous what we pay for the extra life insurance.
I don't have life insurance and I realize I won't be able to afford it. So my plan is to donate my body to the U of Michigan and let them pay to get rid of it. Who knows...maybe they will find a way to cure AIH. I hope I didn't sound morbid to anyone for making this comment. Or maybe I just sound cheap. lol
Good luck with having baby #2 Steph. All kids should have a sibling to fight and argue with. I know mine managed to make me appreciate my mom for having 6 children. CindyView Thread
Thank you. I hope everyone stays as healthy as possible while I am away. Once your thyroid meds are under control you should start to feel a little better. Don't we all wish we had read, and knew about AIH before we got it...or during the time we were being diagnosed. See you next month. CindyView Thread
The earlier the diagnosis the better the chance of keeping it controlled. We know about being so tired you just want to lay your head on the pillow and sleep forever. Rest as much as you can...your body is trying to heal. It also will help mentally, and emotionally. I'm glad you decided to join in our converstations. Getting support when everyone around you is asking "what is autoimmune hepatitis" is a nice feeling. Knowing you are not alone, and there are people who understand what you are going through. CindyView Thread
How is your mom doing? As bad as I felt after my surgery, it was no way as bad as what your mom went through at her age.I pray that she is healing well.
No one mentioned that my liver could be affected by this trauma to my body. I sure hope it doesn't, because I know that I don't need my liver to act up, or another autoimmune disease to flare up because of the trauma. I won't have blood work done until January, so time will tell.
Wouldn't it be nice if a doctor actually had answers to our questions!View Thread
Hi Ann, I wish I had kept copies of my ALT score when I first got AIH. I I can't say what they were before the prednisone and Imuran. There wasn't the support group or websites around 7 years ago, so I didn't know that some day I would want to have this information. I have been off prednisone for about 3-4 years now. I don't know what the report read on my first biopsy. At one time I had my hospital records but I took them to U of Michigan and of course they kept them. If I had only known enough to make copies first...duh. My latest biopsy report read "mild chronic hepatitis". It would be nice to know if that wording changed from the first biopsy. I hope your blood work has better scores later this month. Did you spoil the grandkids rotten? I hope so. Take care Ann, CindyView Thread
It was a long month but I am back to normal. A little rocky in the emotion department, but with time that will get back to normal too. We all know how those little set backs can really mess with our heads. [That's where those prayers really help.>
The report of my biopsy reads "mild chronic hepatitis". So that was very good news.
I'll be heading north to deer hunt next week and won't be back until the end of the month. Looking forward to watching birds, reading and relaxing in my deer blind...and shooting a deer if the chance comes along.
I will be thinking and praying for everyone in our group while I am away.View Thread