I also have AIH, and yes it is very frustrating. Up the meds, lower the meds, fix one thing, but cause havoc on some other body part.. its good to have a sense of humor... I have been on pred for over a year,tried Imuran but didn't have a good reaction to it... acutally, at this point I am not even sure if it was the Imuran or the other stuff that was going on that made me feel crappy. The pred. is no picnic......Having a liver biopsy next week, not looking forward to it..... they say 1 in 100,000 bleed to death.... I hope I am at least #2..... Switched Dr's but this one isn't looking to promising either, they all seem to have an attidude........Take care...Rhonda
Hey Rhonda - I'll be thinking about you but if it makes you feel any better, I had two biopsies within two weeks when they were trying to diagnose me and both were ok. There was very little discomfort. Having to lie still for 2 horus afterward was hard for me but that is just because I have a hard time doing nothing. Please let us know how you are doing afterward but I know it is going to be just fine.
Hi Lucy - Ok, that makes me feel better. I felt like I wanted to scream and kick my feet so I know exactly what you are saying. I am 44 years old and should be past this behavior! Therefore, I just have smile my way through this and hopefully it will settle down. Got it.
I know the pred is a necessity but I have gained 40+ pounds while on it. The dr. says that I'll always have to take it. Has anyone ever gotten off of it and not had a flare?
Hi everyone. I have not posted for quite a while. I have been well throughout this time. For those i haven't met i have had AIH for four years. Originally on Pred and imuran but now 8mg Pred and CellCept. Have been on 8mg for 10 months now. Very frustrated that heptologist has not lowered dose despite good levels. He's always inclined to err on the safe side and i have relapsed twice at 7.5 in the past.
A question for you. One of my first symptoms was mouth ulcers which my GP and heptologist said were not related to AIH. I have them again now. Really bad ulcers on the tongue which are causing much pain and discomfort.
Has any one else suffered this? Ithink they are sometimes called canker sore (not in australia where i am)
Take care all.Marg
Hey Marg - I didn't have any sores when I was diagnosed but I have had a couple since. According to what I have been told, this is a virus that 90% of the human population has and when your immune system gets run down or as in our case, shut down, we are more apt to have them pop up. Mine showed up on my lips. There is an ointment here in the US called Abreva that really helped them heal much faster. Also, as Lucy said, food that are high in acid can trigger them too.
“Life is not the way it's supposed to be. It's the way it is. The way you cope with it is what makes the difference."