New member who needs help!

Posted February 4, 2003 · February 4, 2003

Allida:

I too have suffered some of the symptoms you describe. However, along with the AIH, I also have been diagnosed with Primary Bilary Cirrosis and microscropic colitis.

I have suffered these type of attacks, with pain starting in my right side, radiating to the center of my back. The pain can be quite intense. In fact, on a few occasions, I have sought treatment from my family doctor and she will give me a shot of demerol.

However, after a few days the pain will go away on its own.

My GI is not sure what causes this, but he gave me an explanation that I also saw from someone else in this group, in that a diseased liver does not handle bile like it is supposed to and sometimes the bile will kind of erupt and effect the pancreas, causing the pain.

You also might talk to your family physician. The pain may be causing a kind of anxiety attack causing your heart to do what it does. I found this out the hard way. Two years ago at the age of 50, I had to have the arties in my neck cleaned out and then two days later had triple by-pass surgery. On top of this, I quit smoking two weeks before the surgery. While in the hospital we began to suspect that I was having liver problems. It took almost a year to get the complete diagnosis, as PBC and AIH is a pretty rare illness.

The first attack of pain my heart felt like it was going to burst out of my chest. Because of the fact that I had had a heart attack, it scared me to death and of course made the pain much worse. After talking to my family physician (a woman that is wonderful) she explained to me how you cannot go through everything that I had in a short period of time and not suffer some major anxiety. She prescribed me Xanax for a few weeks. I had another of these pain attacks, but without the racing of my heart. Unfortunately Xanax is quite habit forming, so she took me off of them on a daily basis and now I only take one when I feel the pain begin. It does not stop the pain, but it does stop me from feeling like I am having a heart attack. No more of the heart racing or the burning sensation that would scare me to death.

Please know this is only my experience, but most of us have a very stressful life without the illness. You add the illness to our already stressful life and sometimes our nerves get to a breaking point.

And please again, this is my experience with the pain. I am in no way diagnosing you, only letting you know my story and what it took to help.

Carolyn D

Posted February 4, 2003 · February 4, 2003

Allida:

After I answered your e-mail, I thought about what you had said about the bloating. I too always suffer from bloating and, but have been told this is common with liver disease. However, you did not mention having a colostomy (forgive the spelling) Because of the liver disease, you might ask your GI. I have talked to other people that are like me and suffer from both the liver diseases and some kind of colon disease. Unfortuately, the bloating and gas is something I just have to live with, but you might ask your GI if there is any possibility of you suffering from any colon disease.

Carolyn D

Posted February 4, 2003 · February 4, 2003

Greetings to all you fellow sufferers out there! I am new to your group and was directed here by one of your members when he spotted my pleas at another site. I surely hope someone out there can give me some advise on what is happening to me, and the best way to go about finding solutions to my problems.

I'll start at the beginning. I was diagnosed with AIH in December. Another lady that I worked with until I retired, was diagnosed with the same thing in November. When we try to talk to one another about our symptoms, it's as though we are talking about two different diseases, even though we supposedly have the same thing. We were both diagnosed with AIH because we had elevated alkaline phosphatase levels, and both eventually had a liver biopsy. However that's where any likeness between us ends.

I originally went to the hospital emergency room in September, thinking I was having a heart attack. I had been pacing the floor for three to four hours with an ice pack clutched to my chest. My heart was racing a mile a minute, then it would slow down very slowly, then it would feel like it was flipping over in my chest, then the cycle would start all over again. Along with that, I had the strong feeling that I had to go to the bathroom, frequent urination, a bloated and gassy feeling, and a sharp pain in my right side, along with a heaviness and sensation of heat in my chest. These are the symptoms I call "my attacks".

The first thing they ruled out at the hospital was a gall bladder attack. I had my gall bladder removed 16 years before. They monitored my heart, did an EKG, and sent me home 4 hours later and told me to see my PCP as soon as possible. He sent me to the heart center here and had me fitted for a monitor. I wore it for 24 hours, and even though my heart was crazy almost the whole time, they said there was nothing wrong with my heart that they could see. My PCP then sent me to the gastroenterologist, because he noticed some of my liver functions were elevated. The gastro doctor started out with an endoscopy. He found nothing. Then he did a CT Scan of the bile ducts. It showed nothing out of order, but I was getting sicker and sicker. He then did an MRI of the bile ducts, and assured me that if there were any stones in my ducts that 95 percent of the time the MRI would see them. It came back negative for any stones in my ducts, but I was getting sicker still. Finally, he did an ERCP. When I came to after the procedure, he told me he found tons of stones in the ducts, and removed them. We both thought that would be the end of the problems. A couple of days later, I was back in the emergency room with the same things going on. I was having one "attack" after another. I finally got so bad, he did another ERCP to make sure he hadn't left any stones in the ducts. He cleared every duct at least three times, thinking there might be something there he just wasn't seeing. When I awoke after that procedure, he told me he was having the liver biopsy done the following week. After that procedure, is when he diagnosed me with AIH. Although the biospy didn't explain anything really to me, he concluded with my alkaline phosphatase levels being elevated, and along with the results of the biopsy, that I indeed had AIH. That was about the middle of December, and he started me on the prednisone therapy. On New Years Day I was back at the emergency room, with my heart going crazy, and having really bad "attacks". I was admitted that time because my amylase was elevated, and they thought I had pancreatitis. When they did blood work on me in the hospital, the gastro doctor discovered that my alkaline phosphatase level was down from 670 to 290, which to him meant we were on the right track with his diagnosis. After I was released, they sent me to the heart center again to have an echocardiogram and a stress test. I had absolutely no problem passing the stress test, and my heart never missed a beat during the whole affair. So they all concluded that my heart isn't the problem, it's just the AIH. I keep asking him why my heart is always so crazy, and why I still have all the same symptoms that I had before all this treatment, and he can give me no answers. In my eyes I am really no better. I still have all the same problems I had before except that I can now eat, whereas, I couldn't for almost 3 months. Every day I get up and take this prednisone and imuran, and face another day with my heart going crazy, this urge to go to the bathroom, the pain in my right side gets worse all the time, and so does the heaviness and heat sensation in my chest, and the bloat and gas. I went to have yet more blood work done on Friday because the last time I had it done, 2 weeks ago, my alkaline phosphatase level was back up to 370, even on the treatment. I am waiting for him to call me back about those results. He has told me that if the treatment doesn't work, he is sending me to a liver specialist at Duke for further assessment.

My questions for this group is have any of you out there experienced these symptoms with AIH? Did they stop after a while, or have they gotten worse like mine have? It used to be they would only last for 3-4 hours, but now they seem to be not as severe, but last almost all day some days. For the last 4 days in a row, my heart has been so crazy, and the pain in my right side throbs all the time. If any of you out there have had these symptoms I would appreciate it if you would contact me and let me know what to do with all this, as I am at my wits end. My friend who was diagnosed in November has none of these same symptoms. The only symptom we share is the exhaustion. Any input from anyone concerning my symptoms would be greatly appreciated. Thank you, Allida

Posted February 4, 2003 · February 4, 2003

I was interested in your story. I have lupus,woth the lupus anticoagulation problem aand PBC. The fatigue is overwhelming.

Posted February 4, 2003 · February 4, 2003

Allida,

Welcome to the group. I am also new. I had a liver biopsy on Dec

27th and was told I have AIH on Jan 6th. I began prednisone on Jan

8th and have had a drastic improvement in how well I feel. It hasn't

really done much for my pain, but overall I simply feel better.

When you say you have pain in your side, can you be more specific? I

have pain under my right rib and through to the back sometimes. The

pain under my right rib is there almost always there, it just varies

in intensity from a sharp nagging pain to the worst pain imaginable.

My pain is not a throbbing pain. It is a constant sharp pain.

My story is long and involved so I won't go into it all. For me, it

started with an attack of acute pancreatitis in July. They couldn't

understand why my pancreas enzymes came down to normal relatively

quickly but my liver enzymes stayed elevated much longer. I have had

so many 'attacks' that I couldn't even begin to count them. They

have explored the various causes for the acute pancreatitis and are

still not really sure of the cause. The best they can come up with

is that I may have sphincter of oddi dysfunction, which causes the

bile from the common bile duct to not flow properly. Sometimes it

disrupts the flow enough to irritate the pancreas, thus the acute

pancreatitis. Other times it only disrupts the flow enough to cause

horrible pain, nausea, and vomiting. After discussing the

possibility of a liver biopsy since Aug, my GI finally did one the

end of December. At least now we have an answer for why my liver

enzymes have been so elevated. My GI has told me that he hopes that

much of my pain, nausea, and vomiting is actually being caused by all

the inflammation in my liver rather than being caused by the

pancreas/bile duct. He is hoping that once the prednisone has helped

the liver to settle down, my pain will stop. I'm trying to patient.

The only times I've had problems with feeling like my heart is going

crazy is when my blood sugar is too high. I don't really feel any

heaviness in my chest, but I get hot (and I'm always freezing

otherwise) and my heart will pound. It was worse in the beginning.

They say my body has gotten used to the blood sugar fluctuations, so

I'm not having as many symptoms with the highs and lows. At first,

it would make me feel like total crap. Now, I have to have much

larger fluctuations in my blood sugar to feel anything. I began

having problems with my blood sugar for the first time in my life in

Oct. (3 months after the pancreatitis returned - I'd had pancreatitis

in 2000) On Jan 21st, I was told I have type 2 diabetes. The

doctors have different theories on that, too. Some say it's from all

the attacks on my pancreas. Others say it just happens. My mom also

has type 2 diabetes, but she was about 8 years older than me when

hers was diagnosed.

As for the bloated, gassy feeling, I do have that fairly often. My

belly will blow up and look like I am a few months pregnant. In a

couple of days it will go back to normal as mysteriously as it became

bloated. I also have problems with very frequent urination but I've

had a couple of UTI's in the last few months so I figured that was

the problem.

Don't know if anything I've told you has helped. By the way, my

current diagnoses are (in order of when they were diagnosed)

systemic lupus

clotting disorder - lupus anticoagulant

recurrent acute pancreatitis

AIH

type 2 diabetes

In my case, it's sometimes hard to know which problem is related to

which medical issue. By the way, I am 41 (42 in 14 days)

W

Posted February 4, 2003 · February 4, 2003

Hi Allida,

I had the flip flopping heart too. It was

a continuous arrhythmia that I walked to the emergency room at Tulane Hospital to get it checked out. I never felt bad but I could hear highly

irregular heart beats with my stethoscope. I too, wore a Holter moniter. The

doctors said I had premature atrial contractions and they were puzzled as to

why I was having them. They said at that time that something was “irritating

the heart”. Also, they were watching me for hypothyroid but nothing could

be seen on the blood tests yet. They just had no answers.

Then two years later I developed AIH, and then recently full blown hypothyroid.

Strange isn’t it?

Now that you are on the prednisone and

Imuran you will feel 110% better! Give it a little time. I am sorry you have to

deal with this but you are in good company here.

Best Wishes!

AIH dx Feb 2002

[ ] New

member who needs help!

Greetings to all you fellow sufferers out there!

I am new to your group and was directed here by one of your members when he

spotted my pleas at another site. I surely hope someone out there can

give me some advise on what is happening to me, and the best way to go about

finding solutions to my problems.

I'll start at the beginning. I was diagnosed

with AIH in December. Another lady that I worked with until I retired,

was diagnosed with the same thing in November. When we try to talk to one

another about our symptoms, it's as though we are talking about two different

diseases, even though we supposedly have the same thing. We were both

diagnosed with AIH because we had elevated alkaline phosphatase levels, and

both eventually had a liver biopsy. However that's where any

likeness between us ends.

I originally went to the hospital emergency room in

September, thinking I was having a heart attack. I had been pacing the

floor for three to four hours with an ice pack clutched to my chest. My

heart was racing a mile a minute, then it would slow down very slowly, then it

would feel like it was flipping over in my chest, then the cycle would start

all over again. Along with that, I had the strong feeling that I had to

go to the bathroom, frequent urination, a bloated and gassy feeling, and a

sharp pain in my right side, along with a heaviness and sensation of heat in my

chest. These are the symptoms I call " my attacks " .

The first thing they ruled out at the hospital was a

gall bladder attack. I had my gall bladder removed 16 years before.

They monitored my heart, did an EKG, and sent me home 4 hours later and told me

to see my PCP as soon as possible. He sent me to the heart center here

and had me fitted for a monitor. I wore it for 24 hours, and even though

my heart was crazy almost the whole time, they said there was nothing wrong

with my heart that they could see. My PCP then sent me to the

gastroenterologist, because he noticed some of my liver functions were

elevated. The gastro doctor started out with an endoscopy. He found

nothing. Then he did a CT Scan of the bile ducts. It showed nothing

out of order, but I was getting sicker and sicker. He then did an MRI of

the bile ducts, and assured me that if there were any stones in my ducts that

95 percent of the time the MRI would see them. It came back negative for

any stones in my ducts, but I was getting sicker still. Finally, he did

an ERCP. When I came to after the procedure, he told me he found tons of

stones in the ducts, and removed them. We both thought that would be the

end of the problems. A couple of days later, I was back in the emergency

room with the same things going on. I was having one " attack "

after another. I finally got so bad, he did another ERCP to make sure he

hadn't left any stones in the ducts. He cleared every duct at least three

times, thinking there might be something there he just wasn't seeing.

When I awoke after that procedure, he told me he was having the liver biopsy done

the following week. After that procedure, is when he diagnosed me with

AIH. Although the biospy didn't explain anything really to me, he

concluded with my alkaline phosphatase levels being elevated, and along with

the results of the biopsy, that I indeed had AIH. That was about the

middle of December, and he started me on the prednisone therapy. On New

Years Day I was back at the emergency room, with my heart going crazy, and

having really bad " attacks " . I was admitted that time because

my amylase was elevated, and they thought I had pancreatitis. When they

did blood work on me in the hospital, the gastro doctor discovered that my

alkaline phosphatase level was down from 670 to 290, which to him meant we were

on the right track with his diagnosis. After I was released, they sent me

to the heart center again to have an echocardiogram and a stress test. I

had absolutely no problem passing the stress test, and my heart never missed a

beat during the whole affair. So they all concluded that my heart isn't

the problem, it's just the AIH. I keep asking him why my heart is always

so crazy, and why I still have all the same symptoms that I had before all this

treatment, and he can give me no answers. In my eyes I am really no

better. I still have all the same problems I had before except that I can

now eat, whereas, I couldn't for almost 3 months. Every day I get up and

take this prednisone and imuran, and face another day with my heart going

crazy, this urge to go to the bathroom, the pain in my right side gets

worse all the time, and so does the heaviness and heat sensation in my chest,

and the bloat and gas. I went to have yet more blood work done on Friday

because the last time I had it done, 2 weeks ago, my alkaline phosphatase level

was back up to 370, even on the treatment. I am waiting for him to call

me back about those results. He has told me that if the treatment doesn't

work, he is sending me to a liver specialist at Duke for further

assessment.

My questions for this group is have any of you out

there experienced these symptoms with AIH? Did they stop after a while,

or have they gotten worse like mine have? It used to be they would only

last for 3-4 hours, but now they seem to be not as severe, but last almost all

day some days. For the last 4 days in a row, my heart has been so crazy,

and the pain in my right side throbs all the time. If any of you out

there have had these symptoms I would appreciate it if you would contact me and

let me know what to do with all this, as I am at my wits end. My friend

who was diagnosed in November has none of these same symptoms. The only

symptom we share is the exhaustion. Any input from anyone concerning my

symptoms would be greatly appreciated. Thank you, Allida

Posted February 4, 2003 · February 4, 2003

.... It was I who invited Allida to jon our group, because I

wanted some of you to see if you could identify with her. hen she 1st

talked to me she told me her doctor Dxd AIH on the basis of her elevated

alkaline phosphatase. Now I know and so should all of us, that alts and

asts are the first clues to any hepatitis and the elevated alkaline

phosphatase levels usually are related to biliary problems (and certain

bone conditions ). Allida has admitted to bile duct occlusions and in

fact had stones cleared twice. She also complained of heart pains and

frequent urination which in my limited knowledge could be indicative of

Lupus. Many patients with Lupus present with pericarditis and frequent

urination, so I suggested she come on line with us to see if any of you

could relate..... and so far you have been the closest. I believe her Dx

is wrong and she actually has Lupus manifesting with a biliary diseae

such as PBC. You have noted that this what you have. I hope you can shed

more light for her. I am not convinced she has AIH because she said she

was not positive for either ANA or ASMA antibodies which are almost

always positive n AIH and suggested she see both a Rheumy and Hep.

specialist. Thanks for responding to her. She may need treatment other

than prednisone and imuran.

love jerry

Posted February 5, 2003 · February 5, 2003

Dear Jerry,

But I did not have a positive ANA and my ASMA was only 'weakly

positive'. What do you think regarding Allida?

Re: [ ] Re: New member who needs help!