Welcome to Healing Well! Sorry you are having trouble with your AIH. I was lucky and my body responded well to the prednisone. I've been off it a few years now. I was also lucky that they diagnosed me quickly. Had I waited to go in, I might have had cirrhosis as well....I was on the cusp and have no scarring. Which immunosuppressant are you on with the pred? How are your LFTs right now? Joint pain is not uncommon with AIH (or any autoimmune problem), it does sometimes come with weaning too quickly but if you're still at 10mg, it sounds like they may have weaned you slow enough...if your numbers are normal. That being said, the cirrhosis does complicate it a bit.
As per what to tell people so they understand...someone with Lupus wrote about
"The Spoon Theory":www.butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf
It is a very good (albeit a little long to read) explanation about
managing the fatigue that goes along with handling a chronic illness. If these people call themselves your friends, gather them up one recess/lunchtime and read the theory to them. Diseases like these when "you don't look sick" are hard for people to understand especially when you have them young and at the age of invincibility as bblbt said.
Many people (young and old) also don't understand how non-drinkers/non hep C'ers can have cirrhosis. The general public assumes that if you have cirrhosis, you have to be an alcoholic or have hep C. So it may be good to give them a quick education on autoimmune liver diseases. Many people understand that younger folk can have diabetes, MS, RA (all autoimmune)...but those are the ones they know of because they are more common...you're special...you get to have a rare disease
So explain to them that on no fault of your own, your body became confused and attacked your liver as something foreign...with it being a vital organ, that has caused many complications for you and the meds that you now have to live on, can be very hard on your body. Having a chronic illness is very hard psychologically. It would probably help you to speak to a school counselor or therapist.
Ask any questions you have. If you want to contact me privately, my email is in a link under my name on the left side.
-----------Dany, I make the link hot, so she can click on it. ML
Post Edited By Moderator (MamaLama) : 7/8/2014 10:23:30 PM (GMT-6)