Hello and introduction: new AIH diagnosis

October 4, 2010

I just wanted to say 'hello' to everybody! I was diagnosed with AIH earlier

this year after about 6-8 months of trying to figure out elevated liver enzyme

levels. I have been trying to get a handle on my diagnosis, and have found the

lack of information on AIH to be a stumbling block. I am definitely looking

forward to having a supportive online community to ask questions of.

I honestly had no idea that hepatitis had such severe symptoms. Right now I have

no clue whether my fatigue, weakness, and confusion are due to the AIH or to my

medication. Since it's so early in my diagnosis, there is still a possibility

that I will go into remission, although from what little I have found it's more

likely that I will at least take medication for the rest of my life to control

the disease.

A few questions that come to mind, if anybody has anything that might help I

would love to hear from you!

1) What have you done to help with fatigue and mental confusion? I've had

trouble with exercise, which I am trying to keep up with, and with not being

able to write as well as I used to, as well as not remembering very basic

things.

2) Does anybody have any experience applying for disability benefits due to AIH

or other autoimmune liver diseases?

3) What kind of medications have you found to work the best? I had a pretty

terrible reaction to Imuran, was so fatigued and weak and heavy-feeling that I

literally could not get out of bed. So now I'm on Cellcept, but am worried about

cancer and such.

Oh! I'm a 29 year old living in northern Illinois. I was working as an ESL tutor

before the fatigue and weakness forced me into (mostly) bed rest. I'm looking at

grad school in the next few years, likely for education or library science,

although I'm also looking at PhD programs if my brain ever decides to return

from its AIH-induced vacation! I'm also a nearly 20 year bone cancer survivor

and do a lot of volunteering for cancer organizations. I would love to hear from

anybody with AIH or other autoimmune liver disorders!

Charlotte

AIH dx March 2010

rx Cellcept 750 2x day, Prednisone 5mg, Lyrica 75 mg 2-3x day

December 1, 2010

Charlotte, I just now saw your message while I was clearing out old files.

Somehow I'd overlooked the post. I'm so sorry that I didn't get back to your

very well written post. I hope you're feeling better by now.

I'm not sure I can speak to all your questions right now; I have an appointment

away very soon. But, let's get started.

First, have you used Dr. Palmer's " Guide to Liver Disease " ? Many of us

find this mainstream book helpful; it's intended for the non-medical person who

is new to liver disease.

In addition, I have a list of several sites that I particularly like. Let me

know if you'd like to see it.

Most of us find that seeing a hepatologist, as opposed to a GI, is helpful, even

if it's only as a second opinion.

1) Fatigue, weakness, and confusion tend to go with liver disease -- and

Prednisone generally plays a role, too. Prednisone is likely to give you " false

energy " , followed by a crash. Often that energy comes at the wrong time, such as

3 am, causing you to want to clean out the garage in the dark. Take naps

whenever you can; I thought naps were somehow shameful secrets. Grab them

whenever you can! Prednisone also can cause major mood swings and depression,

sometimes elation. I have the abstract of a study done at Wayne State U showing

a relationship between short-term memory loss and Prednisone use. It seems to me

better to know of negative possibilities than to be blind-sided by the reality.

I hope you're taking azathioprine or similar in addition to Prednisone.

You say, " Since it's so early in my diagnosis, there is still a possibility that

I will go into remission " . As far as I know, remission, should it occur, is more

likely after standard medication treatment. I've not heard of remission without

medication.

You add " . . . from what little I have found it's more likely that I will at

least take medication for the rest of my life to control the disease. " Most

people do continue with medication life-long, I think. That medication might

include a maintenance dose of Prednisone (probably my situation) or it might be

only azathioprine. Prednisone reduction must be slow and carefully monitored. I

assume you're having frequent blood tests.

You mention exercise. My doctor told me to do as much exercise as my body was

happy with, but to listen to my body, not to ask more of it than was reasonable.

Weight-bearing exercise, including walking, is particularly good for combating

the bone loss that can come with Prednisone use.

Speaking of that bone loss possibility, make sure you're taking calcium

(preferably calcium citrate, I think) with vitamin D or D3. Get a bone scan now,

to use as a baseline. I don't know how your previous bone cancer might play

into this. Dietary calcium and weight-bearing exercise will help. too.

2) Benefits. As far as I know, benefits aren't linked to the disease but only

to your ability to work. Do you have any sort of insurance that might apply? (My

employee-based insurance told me, quite incorrectly, that I wasn't covered. I

was so wobbly that I didn't think to appeal. If you have friends or family who

can help with all this, bring them in.)

I live in California, and years ago I was able to get a full year's salary very

easily through a state program. I discovered this only by chance.

As for SSDI, here are a few bits of information. I didn't apply, because I

thought I would soon recover and return to work, and that SSDI should be kept

for people who were really poor. I never became well enough to work, and after

some amount of time passes without work you are no longer eligible until you

work again. And, my ideas about not taking advantage of SSDI because I wasn't

really poor were absurd! Not applying was one of the biggest mistakes I ever

made; my brain wasn't working very well at the time.

My daughter applied for SSDI and was turned down once or twice. Then she used a

for-profit group, Allsupp (Alsup? not sure of spelling), which helped her

through the process successfully and pretty painlessly. Keep records of

everything -- difficulties in thinking, pain, time lost from work, lab tests,

medical appointments, etc. This will make application far easier.

3) Medications: Are you not taking any prednisone? You say you can't take

Imuran. Most people have a toxicity test before hand to tell them whether they

can take it at all, and how much. All the meds used for AIH have side effects. I

don't know the relative degree of problems with CellCept and others, but there

is more than that one possibility. Your hepatologist and you must work together

to decide what fits you best. AIH, untreated, has an extremely high mortality

rate, so I figure the side effects of anything I take are better than that

result!

Don't take anything at all by mouth, not even the most common OTC meds, without

your doctor's approval. Ask NOW what you can use for minor pain relief.

Get your flu shot, Hep A and B vaccine, pneumo vaccine. This is important, as

immunosuppressants make us vulnerable. Avoid anyone who has just had a live

vaccine or who has any contagious illness -- especially chicken pox, if you

haven't had it. I've heard recently that we ought to avoid those with active

shingles outbreaks, but I'm not sure of that; other sources say it isn't

contagious. Wash your hands often.

I hear from many people who go on to lead happy, productive lives with AIH.

There's no reason you can't be one of them. You already have practice in dealing

well with a life that's not ordinary.

(Ms) Harper

AIH dx 2000

CD dx 2002

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