Re: Questions - Hair loss, More Questions

[Guest guest]

>From: Geri Spang <spangs@...>

>

>Kathy, >

>I'm down to 5 mgs. of pred right now, hoping to wean off entirely.

>However, I know that I may not be able to do without it. Of course I care

>about the unsightly side effects but I'd rather be fat and alive than have

>a lovely corpse.

Geri

I didn't mean to imply that I wouldn't take prednisone just because of the

weight gain. I had horrible side effects. My blood pressure was extremely

high as well as my heart rate. I had uncontrollable diabetes - my sugars

were 500 - 600 even with insulin shots and pills (normal is 120). My

potassium level bottom out to almost nothing, and I had horrible leg and

feet cramps with it. Its almost a matter of which way you want to die. Do

you want your kidneys and heart to shut down or do you want to die from

liver failure. I will have to pass on both. If it was just the weight gain

I would be on it right now.

I also gained 50 pounds from the stuff and it still hasn't come off yet. I

have lost about 20 of it but my face still looks like a balloon. They have

check me for Cushing's and checked my Adrenal glands but everything is o.k.

They can't figure out how come its not going away. When I was on it before

the weight came right off.

My husband is also very supportive about the weight and hair loss. He says

he doesn't care what I look like. It would just be easier if my face wasn't

so fat, then I could just shave my hair off (since it is all falling out)

and I would be in style. But, you can't even tell I have any cheek bones

right now. So, I think it would look horrible.

I also have a question concerning blood tests. My SGPT are normal and my

SGOT's are around 60 (and climbing). But all of my other liver tests are

perfectly normal (billiruim etc.), and my smooth muscle anti-body is normal.

I just can't figure it out. If my liver is in such bad shape how can the

functions actually be o.k.? And I feel horrible all the time. It just

doesn't make since. The biopsy showed I was in stage 2+.

I am sorry for rambling on like this. But this is all new to me. I was

originally diagnosed with Sarcodiosis (spelling) years ago and was on

prednisone and methotraxate (which is toxic to your liver). I had a liver

biopsy done because of this and the AIH showed up. But it was ignored and I

was told to continue on the the methotrexate and prednisone. I was taken

off the pred. and kept on the metho and done great for 2 years. then I

started feeling bad again. they put me back on pred. and since the metho

wasn't working they switched me to Imuran. I still did not respond to this

either. Right after this I moved to a big city and found a wonderful

doctor. I didn't have Sarcodiosis. I had AIH and this is what had been

wrong with me for years. So they took me off all meds for 8 months so they

could find out what was exactly going on. I also have Fibroymlgia

(spelling) its chronic muscle pain and tiredness (related to Chronic Fatigue

Syndrome). Now I have been back on the Imuran for about 2 months and no

improvement. I don't think it is going to work on me.

Kathy

_______________________________________________________________

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[Guest guest]

Kathy,

Prednisone can cause a constant battle with our bodies, no doubt about it.

I also can't seem to get rid of the weight I've gained. Right now I'm 30

lbs. heavier than I was before I started taking the stuff, despite being on

less than 10 mgs. for months. I don't have the moon face anymore, at

least. However, at 5 mgs. going into the second week (tapering down at

approx. 1 mgs. every 2 weeks) I'm just starting to have some major aches

and pains. These aren't caused by the Prednisone, but by the dependency

I'd developed. Literally, I'm going through a very miserable withdrawal.

Until I started on pred I never had elevated glucose, cholesterol or

tricglycerides. Now they're always elevated, but not anything like yours.

I realize that pred can trigger diabetes if the tendency is already there.

My blood pressure is higher than it used to be but sometimes it's also

very, very low. That seems to go with the territory.

Were you taking diuretics when you had the leg cramps and low potassium? I

started on very large quantities of diuretics at first but I took potassium

with them, always. Later I was changed to a potassium sparing diuretic

because I continued to have leg cramps. None of that was related to

prednisone, but instead was because of fluid retention caused by liver

disease. Believe it or not, even one banana a day will go a long ways

towards relieving leg and feet cramps. The cramps in my feet were so bad

that I could watch them cramp and my toes turn under, but I haven't had a

problem for months.

I have had a history of blood in my urine that dates back as far as 1992

though the only kidney problem they've found has been an enormous kidney

stone that was removed in 1993 by lithotripsy and a small, benign renal

cyst. My Hepatologist told me that the danger of kidney damage is from the

diuretics, perhaps in conjunction with prednisone, though that wasn't what

he said. I do know that AIH patients can develop a very serious kidney

problem, but again, it's part of the liver disease, not caused by the

drugs. I don't know about heart problems. I haven't read anything about

actual heart damage caused by pred or Imuran.

Both Prednisone and AIH apparently affect the way your body produces and

distibutes fat, I believe. I started gaining weight (in my stomach) long

before I started taking Prednisone. Of course, there's always that old

(unmentionable) age factor, too. We do tend to gain and retain weight more

easily as the years pass and sometimes this happens at a younger age than

we'd like it to.

Arent' SGOT and SGPT the same as ALT and AST? Mine are almost always

normal, except before I started taking pred and of course, before I was

diagnosed. They haven't been elevated since March of 1998. When I first

got sick, my ALT (SGPT) was 165. Last week it was 21. My SGOT was 194 and

last week it was 29. On the other hand, my GGTP was 97 in March of 1998

and last week it was still above normal at 79. It's not been within normal

ranges in a year and a half. I think it only means that I have diminished

liver function.

I'm not sure about the smooth muscle (ANA) results. I still don't know for

sure what it's supposed to mean. Mine always shows <1:80 with few

exceptions. My biopsy report from when I was diagnosed in November 1997

says, " the anti-smooth muscle antibody is positive at 1:40. " So, is higher

better or is it worse? To tell the truth, my Hepatologist never checks it

anymore. He's more concerned with my Prothrombin time and other values.

It took me at least 2-3 months to start feeling better after I started

taking pred and Imuran. I've only been off pred for one month in the last

year and a half and believe me, by the time I started taking it again, I

was ready for it! I could hardly walk because of joint and muscle pain.

I'll take Imuran for life but I haven't noticed any side effects from it at

all. I'm very grateful for that. My doctor does want me off pred but it

isn't going to happen quickly since my own adrenal system doesn't seem to

want to kick in like it's supposed to.

It's 3:30 AM and tomorrow I have to have a bone density test. I expect

GOOD news. Also a mammogram, which always makes me more nervous than

anything because of so much breast cancer in my family, but I expect good

news there, too.

Anyhow, time for me to hang it all up for the night.

Take care,

Geri

[Guest guest]

Geri:

It is my understanding from my hepatologist that SGOT and SGPT are indeed the

same as ALT and AST. That is one reason we can't always compare numbers.

Besides using different names, etc., different labs use different numbers for

normal. A 26 could be a normal reading at one lab and high at another

depending on what scale they use, etc.

Also, from what I've read, the effect of prednisone on heart disease is that

prednisone causes so many other problems that lead to heart disease (diabetes,

high blood pressure, excess fat). I have never heard that prednisone effects

the heart directly.

Has anyone heard differently? I would like to know as my dad died of heart

failure at 46 and my grandpa at 52. My cousin, who is 46, has had 3 heart

attacks. All my relatives have died from heart attacks. When the doctor asks

me if cancer runs in the family, I always say, " I don't know. No one lives

long enough to get it. "

Kaye AIH - Ohio

Geri Spang wrote:

> From: Geri Spang <spangs@...>

>

> Kathy,

> Prednisone can cause a constant battle with our bodies, no doubt about it.

> I also can't seem to get rid of the weight I've gained. Right now I'm 30

> lbs. heavier than I was before I started taking the stuff, despite being on

> less than 10 mgs. for months. I don't have the moon face anymore, at

> least. However, at 5 mgs. going into the second week (tapering down at

> approx. 1 mgs. every 2 weeks) I'm just starting to have some major aches

> and pains. These aren't caused by the Prednisone, but by the dependency

> I'd developed. Literally, I'm going through a very miserable withdrawal.

>

> Until I started on pred I never had elevated glucose, cholesterol or

> tricglycerides. Now they're always elevated, but not anything like yours.

> I realize that pred can trigger diabetes if the tendency is already there.

> My blood pressure is higher than it used to be but sometimes it's also

> very, very low. That seems to go with the territory.

>

> Were you taking diuretics when you had the leg cramps and low potassium? I

> started on very large quantities of diuretics at first but I took potassium

> with them, always. Later I was changed to a potassium sparing diuretic

> because I continued to have leg cramps. None of that was related to

> prednisone, but instead was because of fluid retention caused by liver

> disease. Believe it or not, even one banana a day will go a long ways

> towards relieving leg and feet cramps. The cramps in my feet were so bad

> that I could watch them cramp and my toes turn under, but I haven't had a

> problem for months.

>

> I have had a history of blood in my urine that dates back as far as 1992

> though the only kidney problem they've found has been an enormous kidney

> stone that was removed in 1993 by lithotripsy and a small, benign renal

> cyst. My Hepatologist told me that the danger of kidney damage is from the

> diuretics, perhaps in conjunction with prednisone, though that wasn't what

> he said. I do know that AIH patients can develop a very serious kidney

> problem, but again, it's part of the liver disease, not caused by the

> drugs. I don't know about heart problems. I haven't read anything about

> actual heart damage caused by pred or Imuran.

>

> Both Prednisone and AIH apparently affect the way your body produces and

> distibutes fat, I believe. I started gaining weight (in my stomach) long

> before I started taking Prednisone. Of course, there's always that old

> (unmentionable) age factor, too. We do tend to gain and retain weight more

> easily as the years pass and sometimes this happens at a younger age than

> we'd like it to.

>

> Arent' SGOT and SGPT the same as ALT and AST? Mine are almost always

> normal, except before I started taking pred and of course, before I was

> diagnosed. They haven't been elevated since March of 1998. When I first

> got sick, my ALT (SGPT) was 165. Last week it was 21. My SGOT was 194 and

> last week it was 29. On the other hand, my GGTP was 97 in March of 1998

> and last week it was still above normal at 79. It's not been within normal

> ranges in a year and a half. I think it only means that I have diminished

> liver function.

>

> I'm not sure about the smooth muscle (ANA) results. I still don't know for

> sure what it's supposed to mean. Mine always shows <1:80 with few

> exceptions. My biopsy report from when I was diagnosed in November 1997

> says, " the anti-smooth muscle antibody is positive at 1:40. " So, is higher

> better or is it worse? To tell the truth, my Hepatologist never checks it

> anymore. He's more concerned with my Prothrombin time and other values.

>

> It took me at least 2-3 months to start feeling better after I started

> taking pred and Imuran. I've only been off pred for one month in the last

> year and a half and believe me, by the time I started taking it again, I

> was ready for it! I could hardly walk because of joint and muscle pain.

> I'll take Imuran for life but I haven't noticed any side effects from it at

> all. I'm very grateful for that. My doctor does want me off pred but it

> isn't going to happen quickly since my own adrenal system doesn't seem to

> want to kick in like it's supposed to.

>

> It's 3:30 AM and tomorrow I have to have a bone density test. I expect

> GOOD news. Also a mammogram, which always makes me more nervous than

> anything because of so much breast cancer in my family, but I expect good

> news there, too.

>

> Anyhow, time for me to hang it all up for the night.

>

> Take care,

> Geri

>

> ---------------------------

[Guest guest]

Hi Geri,

You were talking about water retention. I was

wondering if water retention only happens when your

liver is severly damaged or if it is only caused by

taking prednisone?

Also, about the smooth muscle antibodies, its my

understanding that it is just a marker for AIH and

isnt necessarily harmful. Having the value you

mentioned just states that it is specific to liver

disease. My doctor doesnt want to test my sma either.

Whether it rises as the disease gets more advanced, I

dont know. But I know within a space of a year my sma

has gone from 1:40 to 1:160.

Take care

Elena

--- Geri Spang <spangs@...> wrote:

> From: Geri Spang <spangs@...>

>

> Kathy,

> Prednisone can cause a constant battle with our

> bodies, no doubt about it.

> I also can't seem to get rid of the weight I've

> gained. Right now I'm 30

> lbs. heavier than I was before I started taking the

> stuff, despite being on

> less than 10 mgs. for months. I don't have the moon

> face anymore, at

> least. However, at 5 mgs. going into the second

> week (tapering down at

> approx. 1 mgs. every 2 weeks) I'm just starting to

> have some major aches

> and pains. These aren't caused by the Prednisone,

> but by the dependency

> I'd developed. Literally, I'm going through a very

> miserable withdrawal.

>

> Until I started on pred I never had elevated

> glucose, cholesterol or

> tricglycerides. Now they're always elevated, but

> not anything like yours.

> I realize that pred can trigger diabetes if the

> tendency is already there.

> My blood pressure is higher than it used to be but

> sometimes it's also

> very, very low. That seems to go with the

> territory.

>

> Were you taking diuretics when you had the leg

> cramps and low potassium? I

> started on very large quantities of diuretics at

> first but I took potassium

> with them, always. Later I was changed to a

> potassium sparing diuretic

> because I continued to have leg cramps. None of

> that was related to

> prednisone, but instead was because of fluid

> retention caused by liver

> disease. Believe it or not, even one banana a day

> will go a long ways

> towards relieving leg and feet cramps. The cramps

> in my feet were so bad

> that I could watch them cramp and my toes turn

> under, but I haven't had a

> problem for months.

>

> I have had a history of blood in my urine that dates

> back as far as 1992

> though the only kidney problem they've found has

> been an enormous kidney

> stone that was removed in 1993 by lithotripsy and a

> small, benign renal

> cyst. My Hepatologist told me that the danger of

> kidney damage is from the

> diuretics, perhaps in conjunction with prednisone,

> though that wasn't what

> he said. I do know that AIH patients can develop a

> very serious kidney

> problem, but again, it's part of the liver disease,

> not caused by the

> drugs. I don't know about heart problems. I

> haven't read anything about

> actual heart damage caused by pred or Imuran.

>

> Both Prednisone and AIH apparently affect the way

> your body produces and

> distibutes fat, I believe. I started gaining weight

> (in my stomach) long

> before I started taking Prednisone. Of course,

> there's always that old

> (unmentionable) age factor, too. We do tend to gain

> and retain weight more

> easily as the years pass and sometimes this happens

> at a younger age than

> we'd like it to.

>

> Arent' SGOT and SGPT the same as ALT and AST? Mine

> are almost always

> normal, except before I started taking pred and of

> course, before I was

> diagnosed. They haven't been elevated since March of

> 1998. When I first

> got sick, my ALT (SGPT) was 165. Last week it was

> 21. My SGOT was 194 and

> last week it was 29. On the other hand, my GGTP was

> 97 in March of 1998

> and last week it was still above normal at 79. It's

> not been within normal

> ranges in a year and a half. I think it only means

> that I have diminished

> liver function.

>

> I'm not sure about the smooth muscle (ANA) results.

> I still don't know for

> sure what it's supposed to mean. Mine always shows

> <1:80 with few

> exceptions. My biopsy report from when I was

> diagnosed in November 1997

> says, " the anti-smooth muscle antibody is positive

> at 1:40. " So, is higher

> better or is it worse? To tell the truth, my

> Hepatologist never checks it

> anymore. He's more concerned with my Prothrombin

> time and other values.

>

> It took me at least 2-3 months to start feeling

> better after I started

> taking pred and Imuran. I've only been off pred for

> one month in the last

> year and a half and believe me, by the time I

> started taking it again, I

> was ready for it! I could hardly walk because of

> joint and muscle pain.

> I'll take Imuran for life but I haven't noticed any

> side effects from it at

> all. I'm very grateful for that. My doctor does

> want me off pred but it

> isn't going to happen quickly since my own adrenal

> system doesn't seem to

> want to kick in like it's supposed to.

>

> It's 3:30 AM and tomorrow I have to have a bone

> density test. I expect

> GOOD news. Also a mammogram, which always makes me

> more nervous than

> anything because of so much breast cancer in my

> family, but I expect good

> news there, too.

>

> Anyhow, time for me to hang it all up for the night.

>

> Take care,

> Geri

>

>

> ---------------------------

[Guest guest]

geri:

Had my Mammogram yesterday and it was really easy. They hurt before but with

the new equipment it is just great. The girls did not know what AIH was and

I was telling them and the medicine etc. During the Xray the girl said, put

your right hand on your hip. I asked what hip? Also had to know if my

zoobies have changed from last year and ofcourse I had to tell them yes.

But all in all I think the test went fine and I don't think I have problems.

Sue AIH

Wisconsin

[Guest guest]

Kaye:

Sorry to read about the people in your family who have died from Heart

problems at a early age.

I lost my Mother when I was 10 and she was 48. Luekemia (spelling) got her

and I always in the back of my mind I thought I would die like her at 48

because my family always told me I was just like her and everything. Well, I

did get sick with I was almost 48 and I made it to the 49 mark so I guess I

feel lucky.

Maybe I will be like my father. He died in 1996 at a ripe old age of 93 1/2

and he died of old age and drank up to the day he died. My sister and I

would share a brandy water with him everyday. But the brandy was very very

weak. Dad and I had a drink the day before he went into a coma. I asked him

if he would like a little brandy and he smiled and say yes. One drink and he

turned to me and told me he loved me and went into the coma. I guess I found

out what my father was really like. I moved out when I was 16 so I guess the

nine months he was in the rest home, I found out alot about him and enjoyed

just sitting with him and holding hands and talking or just looking out the

window.

Sue AIH

Wisconsin

[Guest guest]

Sue - that is sad about your mother. It is so awfully sad to lose a parent at

such a young age - my dad was only 46.

Do you have children? Do you worry about them developing autoimmune diseases?

I

have a 19 year old son and 18 year old daughter. My son inherited my allergies

and my daughter inherited my endometriosis. I'm so afraid they have inherited

the likelihood of autoimmune diseases, too.

Kaye AIH - Ohio

Roselle50@... wrote:

> From: Roselle50@...

>

> Kaye:

>

> Sorry to read about the people in your family who have died from Heart

> problems at a early age.

>

> I lost my Mother when I was 10 and she was 48. Luekemia (spelling) got her

> and I always in the back of my mind I thought I would die like her at 48

> because my family always told me I was just like her and everything. Well, I

> did get sick with I was almost 48 and I made it to the 49 mark so I guess I

> feel lucky.

>

> Maybe I will be like my father. He died in 1996 at a ripe old age of 93 1/2

> and he died of old age and drank up to the day he died. My sister and I

> would share a brandy water with him everyday. But the brandy was very very

> weak. Dad and I had a drink the day before he went into a coma. I asked him

> if he would like a little brandy and he smiled and say yes. One drink and he

> turned to me and told me he loved me and went into the coma. I guess I found

> out what my father was really like. I moved out when I was 16 so I guess the

> nine months he was in the rest home, I found out alot about him and enjoyed

> just sitting with him and holding hands and talking or just looking out the

> window.

>

> Sue AIH

> Wisconsin

>

> ---------------------------

[Guest guest]

Kaye:

I only have who is 15 1/2 and I did have a miscarriage when was 4.

I think that AIH was in my system then. was 2 months early then the

miscarriage. Then I stop having periods when I was 45. Once in a great

while I would have one but nothing for about year and half now.

Sue AIH

Wisconsin

PS Yes I worry about getting AIH but everyday they a finding new

medicine so I have hope.

[Guest guest]

Kaye,

My mother, her mother and all five of her sisters had heart problems,

probably due to Rheumatic Fever when they were children. The women in my

family also are inclined towards stroke and breast cancer, yet none of them

were ever overweight (not skinny, but no big weight problems). For some

reason, I don't worry about heart disease though I also had Rheumatic Fever

as a child. Nor do I worry much about breast cancer despite three of my

aunts having lumpectomies the same year. Maybe I'm whistling in the dark,

but I've never had blood pressure problems and before I started taking

Prednisone, my cholesterol was always just where it should be.

For me, Prednisone has been worth the risk. I know that many other people

don't like the risks that come with it. I suspect that I'd feel

differently if I were younger, but I've reached the age where something is

bound to be trying to get me, so I can't let myself feel anxious about what

it's going to be. Wouldn't it be ironic, though, to control the AIH and

then find out I had breast cancer or something even worse (at least I don't

have ovaries to worry about anymore.)

My two biggest fears are stroke and losing my eyesight. Otherwise, I don't

worry much about possibilities as long as I'm doing my best to take care of

myself and I think my docs are making a half a***d effort to keep me up and

running.

My lab tests all show ALT (SGPT) and AST (SGOT), written out on the report

just like that - which I didn't realize until after I sent my question

about whether they're the same thing. The lab I go to here in Las Vegas

has labs in several western states so I suspect they use the same values at

all of their labs. Most of the local doctors don't do their own lab work,

so there is somewhat of a standard here. However, I've seen others post

figures that in no way relate to the figures I see on my own lab reports.

It definitely can cause some confusion for all of us if we try to compare

figures.

Take care,

Geri

[Guest guest]

Hi Elena,

I had fluid retention long before I started taking Prednisone. Originally,

it was in the form of ascites (abdominal fluid), which can be dangerous

because the abdominal fluid can result in a life threatening infection. I

felt and looked increasingly bloated and thought I was developing a kidney

infection. It finally became so swollen I couldn't sit upright to eat

dinner and had to lie on my side in bed and eat from a tray. Believe it or

not, I didn't see a doctor until that had been going on for a few weeks.

For me, anyhow, the fluid retention extended to my feet and ankles and when

I could scarcely find a pair of shoes I could wear, I finally saw a doctor

(almost too late by then.)

So, no, Prednisone is not the only cause of fluid retention. However, it

does sometimes cause that dreaded moon face and hump on the back. But

that doesn't happen to everyone and it seems to be dose related. Mine came

and went fairly quickly and now I have a nice slim face and a pot belly.

Sounds adorable, doesn't it? I used to snicker at women who tried to hide

their girth under tunics and overblouses and now I'm one of 'em and proud

of it! ) I thought that no one should feel ashamed of how they look and

try to conceal it. Easy to think that way when you're slim. Not so easy

when you're not.)

I still haven't figured out what's considered normal or not normal about

the smooth muscle antibodies counts. Is <1:20 good, negative, or what? Do

you know anything about the ranges? Mine seem to go up and down and I

wonder why. So, since mine most recently tested at <1:80, is that a good

thing, a negative, or meaningless? The Rheumatologist I just saw ordered

the test to try to identify Lupus, in case it exists. We could go crazy

worrying about our erratic labs.

Take care,

Geri

[Guest guest]

Hi Geri

Thanks for getting back to me. Is fluid retention

caused by AIH or Cirrohsis?

About the smooth muscle antibodies. Ranges differ

between labs but generally below 1:20 is negative,

1:40 positive and 1:80 high,Usually, seen in AIH. Im

not sure why the figure fluctuates. Mine has just

risen over the past year. Another thing im also not

sure about is whether smooth muscle antibodies are

seen in other autoimmune diseases. What I do know is

that it is a marker for AIH.

Elena

--- Geri Spang <spangs@...> wrote:

> From: Geri Spang <spangs@...>

>

> Hi Elena,

> I had fluid retention long before I started taking

> Prednisone. Originally,

> it was in the form of ascites (abdominal fluid),

> which can be dangerous

> because the abdominal fluid can result in a life

> threatening infection. I

> felt and looked increasingly bloated and thought I

> was developing a kidney

> infection. It finally became so swollen I couldn't

> sit upright to eat

> dinner and had to lie on my side in bed and eat from

> a tray. Believe it or

> not, I didn't see a doctor until that had been going

> on for a few weeks.

> For me, anyhow, the fluid retention extended to my

> feet and ankles and when

> I could scarcely find a pair of shoes I could wear,

> I finally saw a doctor

> (almost too late by then.)

>

> So, no, Prednisone is not the only cause of fluid

> retention. However, it

> does sometimes cause that dreaded moon face and

> hump on the back. But

> that doesn't happen to everyone and it seems to be

> dose related. Mine came

> and went fairly quickly and now I have a nice slim

> face and a pot belly.

> Sounds adorable, doesn't it? I used to snicker at

> women who tried to hide

> their girth under tunics and overblouses and now I'm

> one of 'em and proud

> of it! ) I thought that no one should feel ashamed

> of how they look and

> try to conceal it. Easy to think that way when

> you're slim. Not so easy

> when you're not.)

>

> I still haven't figured out what's considered normal

> or not normal about

> the smooth muscle antibodies counts. Is <1:20 good,

> negative, or what? Do

> you know anything about the ranges? Mine seem to go

> up and down and I

> wonder why. So, since mine most recently tested at

> <1:80, is that a good

> thing, a negative, or meaningless? The

> Rheumatologist I just saw ordered

> the test to try to identify Lupus, in case it

> exists. We could go crazy

> worrying about our erratic labs.

>

> Take care,

> Geri

>

>

> ---------------------------

[Guest guest]

Geri:

I, too, am grateful for prednisone in spite of the side effects. When I used

to say things like, " I can't believe how fat I am, " etc., my kids would always

respond with, " Better to gain weight than be 6 feet under. " Kind of puts

things in perspective.

I am worried about my eyesight, too. It is getting extremely poor and I know

some is age and some is the disease or prednisone or both. I especially notice

that when I am looking at one thing and then look at something else, I become

totally unfocused. Of course, some prednisone users might say if they lose

their eyesight they won't be able to see how fact they've gotten!! I'll take

the eyesight anyday.

You certainly had a lot of energy the other night. You must have answered

about 10 e-mails!! We all enjoy your upbeat and informative scripts.

Kaye - AIH - Ohio

Geri Spang wrote:

> From: Geri Spang <spangs@...>

>

> Kaye,

> My mother, her mother and all five of her sisters had heart problems,

> probably due to Rheumatic Fever when they were children. The women in my

> family also are inclined towards stroke and breast cancer, yet none of them

> were ever overweight (not skinny, but no big weight problems). For some

> reason, I don't worry about heart disease though I also had Rheumatic Fever

> as a child. Nor do I worry much about breast cancer despite three of my

> aunts having lumpectomies the same year. Maybe I'm whistling in the dark,

> but I've never had blood pressure problems and before I started taking

> Prednisone, my cholesterol was always just where it should be.

>

> For me, Prednisone has been worth the risk. I know that many other people

> don't like the risks that come with it. I suspect that I'd feel

> differently if I were younger, but I've reached the age where something is

> bound to be trying to get me, so I can't let myself feel anxious about what

> it's going to be. Wouldn't it be ironic, though, to control the AIH and

> then find out I had breast cancer or something even worse (at least I don't

> have ovaries to worry about anymore.)

>

> My two biggest fears are stroke and losing my eyesight. Otherwise, I don't

> worry much about possibilities as long as I'm doing my best to take care of

> myself and I think my docs are making a half a***d effort to keep me up and

> running.

>

> My lab tests all show ALT (SGPT) and AST (SGOT), written out on the report

> just like that - which I didn't realize until after I sent my question

> about whether they're the same thing. The lab I go to here in Las Vegas

> has labs in several western states so I suspect they use the same values at

> all of their labs. Most of the local doctors don't do their own lab work,

> so there is somewhat of a standard here. However, I've seen others post

> figures that in no way relate to the figures I see on my own lab reports.

> It definitely can cause some confusion for all of us if we try to compare

> figures.

>

> Take care,

> Geri

>

> ---------------------------

[Guest guest]

Sue:

I have had a wierd menstrual cycle for the last few years. Have it once in six

months then six times in one month. Do you think there is any relation between

early menopause and AIH? My other relatives experienced later menopause than

the average so I think AIH may be involved in my early menopause.

Kaye - AIH - Ohio

Roselle50@... wrote:

> From: Roselle50@...

>

> Kaye:

>

> I only have who is 15 1/2 and I did have a miscarriage when was 4.

> I think that AIH was in my system then. was 2 months early then the

> miscarriage. Then I stop having periods when I was 45. Once in a great

> while I would have one but nothing for about year and half now.

>

> Sue AIH

> Wisconsin

>

> PS Yes I worry about getting AIH but everyday they a finding new

> medicine so I have hope.

>

> ---------------------------

[Guest guest]

Kaye:

I really thing that AIH had something to due about the early menopause. My

sister how is 16 months older that me still has periods. My other three

sisters have had their plumbing taken out.

I just glad that I got to have and enjoy the like of motherhood. Good

days and bad days.

Sue AIH

Wisconsin

[Guest guest]

Kaye,

I too have trouble with my eyes. They have deteriorated an awful lot since

all this started. Also I have fluid retention in my eyes (would you

believe) the eye specialist says it is extremely rare but says it is caused

from the combination of the drugs and the disease.

Funnily enough I have found that since being put on diuretics the fluid

retention in my legs and feet has gone, and so has the fluid in my eyes.

Problem now is that yesterday my doctor told me to try and go off the

diuretics. Only use them if my feet and legs come up again. I suppose the

tummy will bloat up again even more so now too.

By aside from the fluid in the eyes, my eyesight has definitely been

affected.

SueB.

----------

> From: Kaye Gillis <kgillis@...>

> onelist

> Subject: Re: [ ] Questions - Hair loss, More Questions

> Date: Tuesday, 29 June 1999 3:39

>

> From: Kaye Gillis <kgillis@...>

>

> Geri:

>

> I, too, am grateful for prednisone in spite of the side effects. When I

used

> to say things like, " I can't believe how fat I am, " etc., my kids would

always

> respond with, " Better to gain weight than be 6 feet under. " Kind of puts

> things in perspective.

>

> I am worried about my eyesight, too. It is getting extremely poor and I

know

> some is age and some is the disease or prednisone or both. I especially

notice

> that when I am looking at one thing and then look at something else, I

become

> totally unfocused. Of course, some prednisone users might say if they

lose

> their eyesight they won't be able to see how fact they've gotten!! I'll

take

> the eyesight anyday.

>

> You certainly had a lot of energy the other night. You must have

answered

> about 10 e-mails!! We all enjoy your upbeat and informative scripts.

>

> Kaye - AIH - Ohio

>

> Geri Spang wrote:

>

> > From: Geri Spang <spangs@...>

> >

> > Kaye,

> > My mother, her mother and all five of her sisters had heart problems,

> > probably due to Rheumatic Fever when they were children. The women in

my

> > family also are inclined towards stroke and breast cancer, yet none of

them

> > were ever overweight (not skinny, but no big weight problems). For

some

> > reason, I don't worry about heart disease though I also had Rheumatic

Fever

> > as a child. Nor do I worry much about breast cancer despite three of

my

> > aunts having lumpectomies the same year. Maybe I'm whistling in the

dark,

> > but I've never had blood pressure problems and before I started taking

> > Prednisone, my cholesterol was always just where it should be.

> >

> > For me, Prednisone has been worth the risk. I know that many other

people

> > don't like the risks that come with it. I suspect that I'd feel

> > differently if I were younger, but I've reached the age where something

is

> > bound to be trying to get me, so I can't let myself feel anxious about

what

> > it's going to be. Wouldn't it be ironic, though, to control the AIH

and

> > then find out I had breast cancer or something even worse (at least I

don't

> > have ovaries to worry about anymore.)

> >

> > My two biggest fears are stroke and losing my eyesight. Otherwise, I

don't

> > worry much about possibilities as long as I'm doing my best to take

care of

> > myself and I think my docs are making a half a***d effort to keep me up

and

> > running.

> >

> > My lab tests all show ALT (SGPT) and AST (SGOT), written out on the

report

> > just like that - which I didn't realize until after I sent my question

> > about whether they're the same thing. The lab I go to here in Las

Vegas

> > has labs in several western states so I suspect they use the same

values at

> > all of their labs. Most of the local doctors don't do their own lab

work,

> > so there is somewhat of a standard here. However, I've seen others

post

> > figures that in no way relate to the figures I see on my own lab

reports.

> > It definitely can cause some confusion for all of us if we try to

compare

> > figures.

> >

> > Take care,

> > Geri

> >

> > ---------------------------

[Guest guest]

Kaye,

Don't want to sound nosy, but how old were you when you went through

menopause. My doctor told me I was young at 40. Then I got AIH. I have

never even thought that they could have been related.

SueB.

----------

> From: Kaye Gillis <kgillis@...>

> onelist

> Subject: Re: [ ] Questions - Hair loss, More Questions

> Date: Tuesday, 29 June 1999 3:55

>

> From: Kaye Gillis <kgillis@...>

>

> Sue:

>

> I have had a wierd menstrual cycle for the last few years. Have it once

in six

> months then six times in one month. Do you think there is any relation

between

> early menopause and AIH? My other relatives experienced later menopause

than

> the average so I think AIH may be involved in my early menopause.

>

> Kaye - AIH - Ohio

>

> Roselle50@... wrote:

>

> > From: Roselle50@...

> >

> > Kaye:

> >

> > I only have who is 15 1/2 and I did have a miscarriage when

was 4.

> > I think that AIH was in my system then. was 2 months early then

the

> > miscarriage. Then I stop having periods when I was 45. Once in a

great

> > while I would have one but nothing for about year and half now.

> >

> > Sue AIH

> > Wisconsin

> >

> > PS Yes I worry about getting AIH but everyday they a finding new

> > medicine so I have hope.

> >

> > ---------------------------

[Guest guest]

Dear Geri,

I'm glad you've been given good results on your Mammogram. I'm so glad to

see things going your way! And about the zoobies, you can give me any you

can spare!!!

I've also had good results recently. Two weeks ago my ALT and AST levels

were 900 and 1000. After starting medication (2 weeks on 40mg of Pred and

50mg Imuran), my levels are now 100 to 200!! I'm going down to 35mg pred

this week and will continue weaning. Anything I should anticipate on this

weaning process? Anyways, take care!

>From: Geri Spang <spangs@...>

>Reply- onelist

> onelist

>Subject: Re: [ ] Questions - Hair loss, More Questions

>Date: Wed, 30 Jun 1999 13:45:48 -0700

>

>From: Geri Spang <spangs@...>

>

>Sue,

>I also had a mammogram last week. All is well. Nice to get good news for

>a change, isn't it? I told her that since I've had AIH my breasts are

>considerably larger (I should have called them " zoobies " . She'd have loved

>it!) She told me whatever I have, she wanted some of it. I don't think

>so, but it was nice to hear that someone thinks there's an upside to having

>AIH and taking Prednisone. Personally, I didn't need to have breast

>enlargement and certainly not this way! I may try to trade in my bras for

>hammocks.

>

>The new equipment certainly is a lot less painful. I was dreading the

>mammogram because of the way they always try to flatten them like pancakes.

> This technician didn't do that. She said it isn't necessary. I worry

>because I know that women with very dense breasts can be difficult to

>detect for breast cancer. Also, so many women in my family have had cancer

>and I have a history of calcification on one side. But, it doesn't seem to

>increase or change, so that's good news. Right now I feel like I know much

>more about how medical procedures work than I ever wanted to know. Enough

>is enough!

>Take care,

>Geri

>

>

>---------------------------

[Guest guest]

Sue: You do not sound nosey at all. I am 47 and my gynecologist says I have

been premenopausal for a few years (irregular periods, lack of estrogen,

etc.) I guess you could say I went through real menopause just this year. I

thought I was young at 47 - 40 is even younger!! I am beginning to hear from a

lot of people that AIH and early menopause are related.

Kaye - AIH -Ohio

milko wrote:

> From: " milko " <milko@...>

>

> Kaye,

> Don't want to sound nosy, but how old were you when you went through

> menopause. My doctor told me I was young at 40. Then I got AIH. I have

> never even thought that they could have been related.

> SueB.

>

> ----------

> > From: Kaye Gillis <kgillis@...>

> > onelist

> > Subject: Re: [ ] Questions - Hair loss, More Questions

> > Date: Tuesday, 29 June 1999 3:55

> >

> > From: Kaye Gillis <kgillis@...>

> >

> > Sue:

> >

> > I have had a wierd menstrual cycle for the last few years. Have it once

> in six

> > months then six times in one month. Do you think there is any relation

> between

> > early menopause and AIH? My other relatives experienced later menopause

> than

> > the average so I think AIH may be involved in my early menopause.

> >

> > Kaye - AIH - Ohio

> >

> > Roselle50@... wrote:

> >

> > > From: Roselle50@...

> > >

> > > Kaye:

> > >

> > > I only have who is 15 1/2 and I did have a miscarriage when

> was 4.

> > > I think that AIH was in my system then. was 2 months early then

> the

> > > miscarriage. Then I stop having periods when I was 45. Once in a

> great

> > > while I would have one but nothing for about year and half now.

> > >

> > > Sue AIH

> > > Wisconsin

> > >

> > > PS Yes I worry about getting AIH but everyday they a finding new

> > > medicine so I have hope.

> > >

> > > ---------------------------

[Guest guest]

Sue,

I also had a mammogram last week. All is well. Nice to get good news for

a change, isn't it? I told her that since I've had AIH my breasts are

considerably larger (I should have called them " zoobies " . She'd have loved

it!) She told me whatever I have, she wanted some of it. I don't think

so, but it was nice to hear that someone thinks there's an upside to having

AIH and taking Prednisone. Personally, I didn't need to have breast

enlargement and certainly not this way! I may try to trade in my bras for

hammocks.

The new equipment certainly is a lot less painful. I was dreading the

mammogram because of the way they always try to flatten them like pancakes.

This technician didn't do that. She said it isn't necessary. I worry

because I know that women with very dense breasts can be difficult to

detect for breast cancer. Also, so many women in my family have had cancer

and I have a history of calcification on one side. But, it doesn't seem to

increase or change, so that's good news. Right now I feel like I know much

more about how medical procedures work than I ever wanted to know. Enough

is enough!

Take care,

Geri

[Guest guest]

Sue,

I was so touched, reading about your relationship with your Dad during his

last days. Through the years I've known several people who hold great

bitterness towards their parents for grievances either real or imagined.

I've reminded more than one person that we only have one set of parents and

we need to let them know we love them because when they're gone, it's too

late to mend fences. My parents were divorced when I was seven, but I

loved them both very much. I don't think that a day passes when I don't

think about them and feel twinges of sadness over the fact that they aren't

here anymore.

Take care,

Geri

[Guest guest]

Geri:

I have just a minute before I fall into bed. My liver tests show that the

AST and AFT are high yet. But that is the least of my problems. I had alot

of pain and numbness in my back and in the liver area and also the spleen and

Kidney area this afternoon and went to ER to have it checked out. I have

some kind of infection in my system and at this time they want me to go to my

doctor and get the White blood and Diff rechecked tomorrow morning. If it is

still high he said I should have an IV and have some antibiotics put though

my system. I wonder what is wrong now.

Also a thought ---Since I have been Prednisone I have no pimples on my face.

Just hair.

Will let you know what I find out.

Take care,

Sue AIH

Wisconsin

[Guest guest]

My dad was a great guy but he was the kind of person that was always right

and what he said was right. But I know he loved his family but he loved his

job more at times.

Sue AIH

Wisconsin

[Guest guest]

Sue,

The infection sounds worrisome. I've read that ascites can cause a fairly

dangerous infection in the abdominal fluid that accumulates. When our cat

Sky bit me, they were going to hospitalize me and give me IV antibiotics if

I didn't respond rapidly to the oral antibiotics I was given. But that was

different than what's happening to you. They know exactly what was causing

the infection. Waiting overnight sounds a little dangerous. I hope

something is done first thing in the morning and above all, I hope they can

isolate the source of the infection right away.

Did they give you anything at all to take during the interim? I hope

nothing is developing in your kidneys or for that matter, anyplace besides

what you already know about. There's just no letup sometimes, is there?

Keep all of us posted about what they find out. You know that we're hoping

for the best for you.

Speaking of pimples - I've never had a complexion problem except those

little zits just before and during my period. However, when I first got

sick from AIH, I developed what almost looked like tiny boils or

blisters/pimples on my face and other parts of my body. As soon as I

started taking Prednisone, they went away. It was like my system was

poisoned.

Take care,

Geri

[Guest guest]

Sue,

My Dad wasn't a very strong person. In a way, that was part of his charm.

Never once in my entire life did I hear him raise his voice, swear, or do

anything that even hinted at violence. Our parents didn't really believe

in spanking though my Mom used to try to make my Dad discipline us and he'd

take us off to " spank " us but instead smack the wall or sofa or something.

I don't think he fooled her. He was just totally irresponsible. Very

handsome, he attracted women like flies and unfortunately, he had no desire

to say " no " . Even at my tender age, I understood why Mom divorced him. We

have to take what we get (with parents) and those who are fortunate get the

best of the bunch. The rest of us have to be grateful for having parents

at all, I guess.

Take care,

Geri

[Guest guest]

Elena,

I had severe fluid retention for several weeks before I was diagnosed with

AIH. I think that it's brought on by a poorly functioning (inflamed or

cirrhotic) liver. Actually, I believe that I'd had ascites for a long time

before my feet and ankles began swelling and before I had a clue that I

might have a real medical problem. A low salt diet can help control fluid

retention, however, and is strongly recommended by most doctors. Mine

didn't really emphasize it to me. Instead, they just suggested I cut back

on salt when I complained about edema. I notice in my medical records from

Scripps that they referred to me as " slim " . Ha! ly, I was NOT slim

when I first saw them even though I'd just started on Prednisone. I'd like

to ask them, " compared to what? " I was the heaviest I've ever been and

most of it was due to fluid retention.

Take care,

Geri