Re: AIH???

[Guest guest]

-HI,

I was diagnosed with AIH in March of this year. I " m 45 years old. The

fatigue and the aches all over were my biggest complaints. I felt

like I couldn't put one foot in front of the other and lost all

interest in the things i enjoyed doing. I hear from others the

fatigue is the biggest thing.

Donna

-- In , " luped47 " <luped47@y...> wrote:

> I'm a 47 yr. old woman diagnosed with lupus & fibromyalgia 2 1/2

> years ago. Now my new rheumy doesn't think it's lupus but a liver

> disease. They suspect autoimmune hepatitis. They thought maybe PBC

at

> first but my AMA's were normal. It's taking me 4 mos. to get in to

> hepatologist for blood work & liver ultrasound. Now another 3 mos.

> before my next office visit with him. My liver enzymes were

elevated

> but I can't remember how much. My pcp says it's not enough to be

> alarmed about. I've been feeling really ill again and am wondering

if

> I'm safe with this taking so long to get a diagnosis? What are

> symptoms that others are experiencing? I have flu like symptoms and

> pain everywhere. It's really hard to explain but it's the illest

I've

> ever felt in my life. I'd love to hear from someone. Thanks.

[Guest guest]

> They thought maybe PBC at first but my AMA's were normal.

Not trying to scare you or anything, but AMA is negative in 5% of

people with PBC, so that doesn't necessarily rule out PBC. I hope

you are having a liver biopsy as that is the best way to tell what

is wrong.

Sandy C.

[Guest guest]

Hi luped47,

I'm new to this group even though I was diagnosed with AIH over a

year ago. I never experienced pain with AIH (until after I stated

taking prednisone), but I was exhausted all of the time. I was tired

for several years, but I finally went to the doctor when I could no

longer teach or grade papers due to fatigue.

It took my gastrointerologist 3 months to figure out that I had AIH.

My AMA was also normal. I was found to have cryptogenic autoimmune

hepatitis. Both my ALT and AST were in the 900's. After a while, I

began to think that I would never find out what was wrong with me,

and I'd just go to sleep one day and never wake up.

I would ask to get a copy of your lab work so that you can see how

high your levels are. The scariest part is that you feel so sick and

have to wait three more months to find out what is the appropriate

treatment. Are you still being treated for fibromyalgia?

I have been reading other posts here recently,and I can see that

there is a lot about this disease that I don't know. But I do know to

keep pushing to get answers. Let your PCP know how poorly you are

feeling. I know it is difficult to do almost anything when you're in

pain and fighting to just stay awake. If you aren't satisfied waiting

another three months for relief, then your doctor needs to

help you push to get answers. If he/she is unable to do so. I'd look

for a doctor who meets your needs.

I pray that you find an answer to the cause of your symptoms and

treatment for it very soon.

Lori

-- In , " luped47 " <luped47@y...> wrote:

> I'm a 47 yr. old woman diagnosed with lupus & fibromyalgia 2 1/2

> years ago. Now my new rheumy doesn't think it's lupus but a liver

> disease. They suspect autoimmune hepatitis. They thought maybe PBC

at

> first but my AMA's were normal. It's taking me 4 mos. to get in to

> hepatologist for blood work & liver ultrasound. Now another 3 mos.

> before my next office visit with him. My liver enzymes were

elevated

> but I can't remember how much. My pcp says it's not enough to be

> alarmed about. I've been feeling really ill again and am wondering

if

> I'm safe with this taking so long to get a diagnosis? What are

> symptoms that others are experiencing? I have flu like symptoms and

> pain everywhere. It's really hard to explain but it's the illest

I've

> ever felt in my life. I'd love to hear from someone. Thanks.