Hello from a new member!

[Guest guest]

Hi Mike,

My name is . I was diagnosed a few weeks ago too, but my Doctor only

put me on 20mg. of Prednisone a day. (started taking it 2 weeks ago). Maybe

it is too early to tell, or maybe because of the lower dosage, I haven't

started having any bad side effects. All I have is a little " nervous energy " .

It will be interesting to see how our blood tests come out after a month or

two.

I am also taking a drug called INH to kill the dormant TB bacteria that I

test positive for.

Good luck with your side effects. (I have been walking 3-4 miles a day.)

I feel blessed to be able to do this, and I don't take it for granted,

because I know that most of our friends in this support group don't have the

energy level or the joints to be able to do that. I just feel like I need to

" make hay while the sun shines " , because I know when I ween off the Pred, I'm

going to be in the same boat.

This is a wonderful group of people. They have been a great comfort to me.

Welcome, and good luck in the coming months.

[Guest guest]

Hello Everyone,

I have been diagnosed with AIH. So, here I am. I received this diagnosis last

Thursday after having an ERCP. The doctors were looking for PSC....and thank

God that wasn't there. I have been on prednisone for about 4 weeks now. I am

taking 40 mg a day. Just recently I have been having some weird problems. I

have been having a lot of joint pain, muscle fatigue in my arms and legs,

general fatigue, stomach pain, burning eyes, and of course about 20 extra pounds

to go along with all of this! Is this the norm when taking prednisone? These

symptoms are not getting less....they seem to get worse everyday.

I went to my PCP today to have it checked out. She said that most of these

symptoms are related to prednisone. She also took some x-rays to make sure

there was no problems from the ERCP. By the way....just in case you have never

had an ERCP and you maybe having one in the future! It was a painless

procedure...except they had to keep waking me up because my blood oxygen was

dropping below 90%. The only part that I really remember..is that he thought he

saw a bile duct that may be constricted. He went in and did angioplasty on that

bile duct. That is the only part I really remember..and it was

uncomfortable...not painful! I don't remember anything else.

Well, thanks for any input you can give me on this. You will be hearing from

me a lot in the future I am sure!!

Mike

[Guest guest]

Hi Mike and welcome to the group!! My name is Lori and I am 33 and was

diagnosed with AIH in July 1996, unfortunately it was not discovered before

it was too late. I was transplanted on 3~11~97 at Mayo in Rochester, MN

There are a few others here that are transplanted like Barbara, but most

have AIH and AIH and other diseases combined. Glad you could join!! Take

Care!! Lori C.

Remember " No one should go through this alone "

[ ] Hello from a new member!

>From: kinger@...

>

>Hello Everyone,

> I have been diagnosed with AIH. So, here I am. I received this diagnosis

last Thursday after having an ERCP. The doctors were looking for PSC....and

thank God that wasn't there. I have been on prednisone for about 4 weeks

now. I am taking 40 mg a day. Just recently I have been having some weird

problems. I have been having a lot of joint pain, muscle fatigue in my arms

and legs, general fatigue, stomach pain, burning eyes, and of course about

20 extra pounds to go along with all of this! Is this the norm when taking

prednisone? These symptoms are not getting less....they seem to get worse

everyday.

> I went to my PCP today to have it checked out. She said that most of

these symptoms are related to prednisone. She also took some x-rays to make

sure there was no problems from the ERCP. By the way....just in case you

have never had an ERCP and you maybe having one in the future! It was a

painless procedure...except they had to keep waking me up because my blood

oxygen was dropping below 90%. The only part that I really remember..is

that he thought he saw a bile duct that may be constricted. He went in and

did angioplasty on that bile duct. That is the only part I really

remember..and it was uncomfortable...not painful! I don't remember anything

else.

> Well, thanks for any input you can give me on this. You will be hearing

from me a lot in the future I am sure!!

>Mike

>

>>Please support the American Liver Foundation!

>

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[Guest guest]

Mike,

I also started on 40 mgs of Prednisone and though it's supposed to mask

pain, I had considerable pain in my back and legs and my feet throbbed and

tingled constantly. I'm now on 5 mgs of pred and have been for a long time

and I've had pain in varying degrees all along. Some of it is obviously

caused by the Prednisone but I can't help but suspect that some of it is

caused by the liver disease itself. Many people in this group have been

told that their liver disease does not cause pain but my doctors have never

told me that. In fact, I was told at the beginning that joint pain was an

early symptom of my AIH, before I was diagnosed.

I also had fatigue so severe I could hardly get out of bed, nausea and

blurred vision. I don't know if this was due to the medications or the

liver disease, but I do know that even though my liver was failing when I

was diagnosed, I didn't feel that terribly sick. I felt much worse after I

started the meds. For what it's worth, these problems decreased over the

months and I'm now in remission for the most part. Your weight gain so

soon is probably because of fluid retention. Do you notice that your upper

legs and abdomen seem abnormally large or puffy? Those are the two places

I noticed it most. I had ascites, which is a particular type of fluid in

the abdominal cavity (and needs to be watched) My feet and ankles were

also badly swollen. My eyes were puffy for months and some mornings I'd

wake up and they would be so bloodshot I'd look like I'd been out all night

(in reality, I was seldom able to sleep for a complete hour at a stretch.)

As the Prednisone decreases, you will most likely see a decrease in some of

the symptoms. Of course, it all depends on exactly what condition you have

and whether you only have a single autoimmune disease. Sometimes they seem

to come in multiples. All of us seem to go through slightly different

symptoms. I've noticed that the rule with these diseases is that there is

no rule.

I hope you get a positive diagnosis soon so you can begin the business of

learning how to deal with the disease and the meds. Believe it or not, in

time you develop a philosophy and life almost will seem normal again,

except at a different pace.

Take care,

Geri