Student needs help with newly diagnosed AIH

Hi Managing,

Welcome to the forum. I'm sorry you are going through this and at such a young age. We have a moderator who is well-versed on AIH and she will help you with your questions. The worst thing would be for you to ignore it.

You have come to the right place, I will email her that you posted in case she doesn't see it. In the meantime, we have others who may be able to shed some light for you. Are you seeing a hepatologist on a regular basis? Prednisone can be tough sometimes, what other meds are you on?

Stick around and don't despair, there are a lot folks here that will guide and support you.

Hugs,

Mae

Hi managing -

I used to be a competitive weightlifter & bodybuilder, competitive hockey player (not someone you'd want to run into on the ice), constantly active running, biking, etc. Have my own business requiring crazy working schedules. In short, anything but lazy.

This disease (mine is an autoimmune form as well, PSC) has driven me to my knees in a relatively short amount of time. Someone who could lift crazy heavy weights now not able to do a single push-up. Simple things like getting out of a chair, opening a door or stairs gets my undivided attention. Afternoon naps aren't a luxury, they are a requirement. Lazy ... I think not. I'd love to talk to your "friends".

They are young and dumb, cursed with the illusion of youth's "false sense of invincibility". You know otherwise. You'll find new friends that do understand. Those that don't or choose not to, well they aren't really your friends.

Good luck in your journey! And know of course, there are friends here.

Post Edited (bblbt) : 7/8/2014 8:28:36 PM (GMT-6)

Hi Managing!

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)

Sorry to hear you are having such hassle from your 'friends'. Take the advice offered here and hopefully things will get better.

The first stage of treating AIH can take time. But most people find a balance of meds that suits them and get on with a normal or near normal life.

I know someone diagnosed at 16 with AIH and cirrhosis. She is now in her early 40s, has 2 wonderful kids and a great career as an electronics engineer with a big computer company. She has worked full time (and more) throughout. Yes she has had a few hiccups along the way but nothing that couldn't be dealt with by good care.

So hang on in there.

Ann

managing but only just said...
Hey everyone at the end of last year I got diagnosed with autoimmune hepatitis thats caused cirrhosis to be honest I have been trying to ignore the diagnosis. It happened right in the middle of my exams I was only 16 and it just freaked me out so I just tried to do my best to pass the school year. I'm 17 now and it's been awhile since I found out, I'm trying to adjust but I'm finding it hard Ive had to cut back on school, I can't do things I use to because I'm too tired etc. I've had chronic abdominal pain for as long as I can remember but what's really getting me is the side effects of all the medications they have put me on. I think its mainly the prednisone I started at 50mg of it daily and am now down to ten but I am having all sorts of issues the the ones impacting me the most are joint pain and fatigue. Before the meds I was tired most of the time but now I'm exhausted all the time and I feel like no one really gets it I mean I am at school part time and my "friends" keep making comments that really hurt like when I say I won't be in history today I need to go and rest someone said "my parents wouldn't let me sleep all day they would just tell me to get over it and stop being lazy" I just feel so alone and I guess I just want to talk to people who understand what its like you know? I don't know but I guess what I mainly need help with right now is how can I get my friends to understand what I'm going though? what should I tell them? Does anyone have any advice?