reply - prednisone and immunizations

[Guest guest]

Hi Geri, (This is a long one)

Check out some of the side effects of prednisone below. The first two I pasted

in from two different web sites, the third had a list so long that I just pasted

in the URL. The lists of side effects are very different from site to site. I

think I could probably search 10 sites and find even more side effects not

mentioned here. I would debate some of the side effects which are referred to

as rare. I've had plenty of them and I know others who have them too...It seems

that this drug has the ability to affect every part of our body.

Side Effects of Prednisone

The most commonly encountered side effects are:

Sodium retention

Increased appetite

Increased fat deposits

Increased acid in your stomach

Increased sweating, especially at night

Increased hair growth

Acne on the face, back, and chest

Bone and muscle problems

Growth problems in children

Eye problems

Increased sugar in the blood

Increased sensitivity to the sun

Delayed wound healing

Decreased ability to fight infection

Thrush (Candida) growth in the mouth

SECOND WEB SITE

Less common -- Decreased or blurred vision; frequent urination; increased thirst

Rare -- Confusion; excitement; false sense of well-being; hallucinations; mental

depression; mistaken feelings of self-importance or being mistreated; mood

changes; restlessness ==With long-term use== -- Acne; back or rib pain; bloody

or black stools; continuing stomach pain or burning; filling out of face;

irregular heartbeats; menstrual problems; muscle cramps, pain, or weakness;

reddish purple lines on skin; swelling of feet; thin, shiny skin; unusual

tiredness; weight gain (rapid) Some side effects are not serious. However, tell

your doctor if these bother you or do not go away: More common -- Increase in

appetite; indigestion; nervousness; restlessness; trouble in sleeping

THIS IS A LONG LIST YOU MIGHT WANT TO TAKE A LOOK AT

http://www.rxlist.com/cgi/generic/pred.htm#sect-Adverse_Reactions

Now here's where things get a little tricky, what is commonly called LFT is

really not a measure of function. AP, ALT, AST, and GGTP are the proteins which

are abundant in liver cells (AP and GGTP are made in bile duct cells) (AST is

made in other places besides the liver) When the cells are sick or dying - these

enzymes usually leak out into the blood. ok so far?

Actual liver function is measured by albumin, bilirubin, ptt as well as

jaundice, fluid retention (ascites or edema), portal hypertension, muscle

wasting, bleeding from esophagus or stomach.

Combinations of tests as well as clinical evaluation give the doctors a picture

of what's going on (hopefully).

EVEN TRICKIER PART- if you've read all the side effects of prednisone - notice

how they mimic actual liver dysfunction.

I had slightly elevated AP,ALT.AST and no other symptoms for seven months and

didn't develop any symptoms until 2 1/2 months before my transplant. Once other

symptoms began, they came on like gangbusters. It started with ankle swelling,

then a general poofing up all over my body. I took lasix one night, lost 19 lbs

of fluid, and I was still poofed up.

THIS PART IS GROSS!

Three weeks before the transplant I had ascites so bad that the doctor had to

stick a needle in my stomach and draw out the fluid (I felt so much better

afterwards) until the transplant my legs and ankles were still horribly swollen.

When people came to the hospital to visit and give me a hug, they remarked at

how much muscle I'd lost and said they could feel my bones. (I should have let

them hug my big fat legs instead)

The most frustrating part of all is that - if you're not taking the meds, you're

tired, poofy, have gastro-intestinal problems, muscle and joint aches, blah,

blah, blah, and possibly dying. If you are taking meds - not much difference in

the way you feel - but big difference in potential liver damage.

While I was taking prednisone, I looked like a cocaine addict. My eyes were

bloodshot most of the time. At yoga class, if I bent down - head below waist -

blood vessels in my eyes would rupture (so very attractive). My nose was always

runny (I think that's why I used to cough - post nasal drip). I would get a

bloody nose if I blew it. I would find mysterious bruises too. Sometimes I had

little red spots under my skin - it was explained that because of the drugs, the

walls of the capillaries were so thin that blood was leaking out. (These little

surprises seemed never-ending).

It's such a complicated disease that it's easy to see why the docs have such a

hard time diagnosing and treating us, and a more difficult time discussing it.

Quite frankly, I don't think they have too many answers. Not everyone has the

classic symptoms; some have few if any symptoms at all.

Geri, I have a very bad feeling that not much research of AIH is going on - to

my knowledge nobody has spent the really big bucks on research -

I think, because of two reasons -

First - there aren't that many of us around who are diagnosed with AIH.

Second - because it mostly affects women.....Somebody tell me I'm wrong -

please!

For the immediate future, I guess, the best we can hope for are more effective

drugs with fewer side effects. At least there is progress on that front.

Later,

---

Barbara Ann

AIH transplant recipient

Get your FREE Email at http://mailcity.lycos.com

Get your PERSONALIZED START PAGE at http://my.lycos.com

[Guest guest]

Barbara Ann,

You've really done some hard research! I identify with that - once I get

started, I can let it go until I've found EVERYTHING out but this is like

opening Pandora's Box. The wider the box opens, the creepier the contents

that come slithering out. Worse, there is no end to what there is to know

about the hows and whys of AIH. Do you suppose our epitaphs are going to

be, " Here lies *******. Cured of the disease but killed by the cure. " ?

From the get-go, it's been clear to me that the meds are what's making me

feel sick. I realize that my traitorous liver was busily self-destructing,

but I didn't feel a thing. No question, I was tired a lot, but who

wouldn't be? We'd just moved from Seattle to Las Vegas and I had to do all

of the packing and unpacking, besides the organizing, because my husband

had emergency back surgery just three weeks before we were scheduled to

move. For several years doctors had convinced me that the increasing

puffiness in my abdomen was just a " woman " thing. When I noticed that my

urine had turned saffron colored and told doctors, they acted like I had a

strange preoccupation with the color of my urine. Palpitations? Women are

neurotic. They get palpitations. If it hadn't finally reached the point

where my feet were too swollen for me to wear shoes and I couldn't sit

upright in a chair because of the fluid in my abdomen, I might have just

progressed into liver failure and that would have been " all she wrote " . I

really, truly did NOT feel sick.

I also had fluid tapped from my abdomen when I was hospitalized. I was

half out and feeling pretty cheery at the time. I remember saying to the

doctors, " Oh, good. You're going to drain all that fluid off my stomach. "

They told me that it wouldn't work exactly that way, but that the swelling

would go down. Hard telling what else I said, but they all (there were five

doctors in all because I actually was in liver failure) stopped by to see

me and acted like we were great buddies. I must have been a riot. We

talked about everything except my condition. I get very chummy when I'm

" out of it. "

When I got home from the hospital the first thing I noticed was that I

actually have bones in my feet. I hadn't realized that my feet must have

been swollen for a long, long time. I thought my feet hurt because of arch

problems or something. Not only that, but when I was lying down my hip

bones were prominent, like they used to be, and I could feel my ribs. I'd

forgotten that I have ribs. In photos taken a few weeks later, I look

nearly gaunt. I lost about 35 lbs. in the hospital.

Then, along came Prednisone and Imuran. I became too weak to do more than

walk from the bed to the bathroom. Sometimes I'd try to get up and simply

collapse back on the bed, unable to even get under the covers. There was

nausea and diarrhea. Nasal congestion was so severe that I couldn't

breathe when I was lying flat and I had constant nosebleeds. I began to

swell up again, like someone was pumping water into me. My legs, which

have always been very slim, became enormous. My feet were so swollen they

frightened people who saw them. Taking a shower was more ordeal than I

could handle most days and I was afraid to be alone in the bathroom for

fear I'd fall. On top of all that, there was nightmarish insomnia and I'd

lie awake so exhausted I'd cry, yet totally incapable of sleeping. Our

cats, who I really think are sensitive to illness in humans, never left my

side except to eat and go to their litter boxes. I developed severe muscle

spasms in my back so that just walking the length of a room became

incredibly painful and I couldn't take any of the meds that might have

relieved the pain. In fact, I reacted to all drugs that the doctors gave

me.

As the months passed, I learned to live with the muscle spasms in my back

and the leg pain and fatigue. I didn't have acne (I wasn't prone to acne

as a teen, either) but I did develop little eruptions on my face that to

me, looked like poison in my system trying to get out. My color was

ghastly and my eyes were usually swollen half shut. Tiny pinpoint,

colorless " warts " erupted all over my body. I was covered with bruises

from unknown sources, and one time I cut my finger (slammed the sliding

deck door on it) and blood flew all over the kitchen - walls, cupboards,

floor, everywhere. I didn't even bother to see a doctor to have it

treated. My voice was so weak it startled everyone who talked to me and my

memory was totally shot. I stopped paying bills until we started getting

shut off notices (I've always handled family finances), then I learned I

could pay most bills by debit card on the phone. Whew.

I mention all of this because in time it became clear to me that this was

due to the medications, not the liver disease. Okay, I had to have the

meds to survive, but I often wondered if it was worth it and there was also

the realization that there was no guarantee the meds would do the job

anyhow. I was, frankly, prepared to die. I began giving things away and

planning for my husband and nephew after I was " gone. "

Gradually, as Prednisone was reduced, I began to feel better. I just

re-read my medical records from Scripps this weekend and found a notation

that I was taken from the high priority transplant category because of my

" remarkable " response to Prednisone. I now have had a few months of

remission, but the ascites is increasing.

I can't read my doctors attitudes. I don't know if they really believe

that I can now take up my bed and walk or if they are trying to convince me

that all is well.

I share most of your suspicians. These specialists are Gastroenterolgists

and Hepatologists. They are not specialists in autoimmune diseases. They

know what probably will work but they don't know why it works for some of

us and not for others. They know what can go wrong but don't know how to

predict it. In other words, they can put out wildfires but they can't do

much else. All of this is further complicated by the fact that the

majority of GI doctors seem to be men and there is the unfortunate male

tendency to minimalize complaints they hear from women patients. We are

perhaps more in touch with changes in our bodies than men, and this is

misinterpreted by doctors to be indication of some form of feminine

neurosis. We have to deal on a regular basis with " too little, too late. "

Research? The best we might hope for right now is that AIH patients will

benefit as a side effect of research done on other liver and autoimmune

diseases. The best thing that could happen to us would be if a couple of

famous male athletes would be diagnosed with AIH. That is a sad reality.

I notice that many of the Internet medical sites don't even mention AIH.

Unbelievable.

Here's what is worrying me right now. When I finally got off Prednisone

completely at the end of last December, I was in so much pain from apparent

adrenal insufficiency, I had to go back to 10 mgs. of Prednisone (on

February 3rd.) At the same time, as the pred was reduced, my feet and

ankles began to swell. My waist/abdomin measurement was larger than my

hips used to be. So, I was doubled up on diuretics. Since February, I've

been taking 40 mgs. of lasix daily PLUS 20 mgs. of Ameloride. My feet are

no longer swollen but the ascites is increasing. But hey, my labs looked

pretty good last time they were checked (in early April). I do feel okay

except for a little nausea now and then and sudden overwhelming fatigue

(when it happens, I stop everything and go to bed, no matter what I'm doing

at the time - which is why my posting here is a little inconsistent.) I've

never been sensitive to pain and I just live with the muscle and joint

aches. I scarcely notice them most of the time.

I've lived a very moderate life in most ways. Lots of stress and emotional

trauma, but physically, I never have " abused " my body. Never had a weight

problem, have drank little or nothing since my " wild " youth, never used

drugs, scarcely even taken prescription drugs. I don't have problems with

depression and in fact, I'm usually quite upbeat and optimistic about life.

I work hard because I like to accomplish things. I actually enjoy hard

work, if that makes sense. So, considering all of that, I got very sick to

the point that I was hospitalized and put on a liver transplant list. Now,

I'm no longer in raging good health and I'm taking some volatile meds. Do

I dare to assume that I'm in some glorious remission that will last for the

rest of my normal life span? That seems to be what my Hepatologists think

(saw both of them this past month). Or are they whistling in the dark? Do

they tell us that everything is wonderful because they don't know one way

or the other, so settle for pats on the head?

We used to have a dentist in Seattle who we really liked. Besides being

good at what he did, he was simply a very nice, likeable and charming man.

One day his receptionist called us to cancel scheduled appointments. He'd

committed suicide. After that, I read that dentists had among the highest

suicide rates in the medical profession. The theory was that their

contacts with patients were almost always negative, because everyone hates

going to the dentist. I wonder if it works the same way with GI doctors?

They deal with liver cancer, AIH, PBC, PSC, colon cancer, etc. All dread

and potentially fatal diseases. Maybe they train themselves not to

" connect " with their patients as a form of self preservation? You have to

wonder if that's partly why so many of them seem to lack the ability to

show compassion and to communicate empathetically with their patients.

Enough of all this middle of the night rambling. As usual, sleep beckons

and here I am fighting it.

Thanks for the information. I'd like to print it out and hit a couple of

doctors over the head with it. Get a clue, guys. We're not really a bunch

of whiners.

Take care,

Geri

[Guest guest]

Geri,

When you were decreasing your pred. did you notice increased anxiety and/or

restlessness. I seem to be more agitated since decreasing the meds.

Extremely emotional also.

Thanks for the info about who to contact in Australia, I'll give it a go.

My abdomen has increased in size also. Terrible feeling. Diuretics are

keeping my feet down. They did all the tests thinking it was my heart but

alas it wasn't, just the meds. (not the disease).

More blood tests to be done next week (I have them done every two weeks, at

the doctors request).

If and when I get right down on the pred. what is the normal procedure for

the immunosuppressants. I know most of you are on Imuran (I was allergic to

it) so I am on cyclosporin. Will that be cut back also?

Keep on keeping on.

SueB.

----------

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

> onelist

> Subject: Re: [ ] reply - prednisone and immunizations

> Date: Monday, 24 May 1999 20:54

>

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

>

> Barbara Ann,

> You've really done some hard research! I identify with that - once I get

> started, I can let it go until I've found EVERYTHING out but this is like

> opening Pandora's Box. The wider the box opens, the creepier the

contents

> that come slithering out. Worse, there is no end to what there is to

know

> about the hows and whys of AIH. Do you suppose our epitaphs are going to

> be, " Here lies *******. Cured of the disease but killed by the cure. " ?

>

> >From the get-go, it's been clear to me that the meds are what's making

me

> feel sick. I realize that my traitorous liver was busily

self-destructing,

> but I didn't feel a thing. No question, I was tired a lot, but who

> wouldn't be? We'd just moved from Seattle to Las Vegas and I had to do

all

> of the packing and unpacking, besides the organizing, because my husband

> had emergency back surgery just three weeks before we were scheduled to

> move. For several years doctors had convinced me that the increasing

> puffiness in my abdomen was just a " woman " thing. When I noticed that my

> urine had turned saffron colored and told doctors, they acted like I had

a

> strange preoccupation with the color of my urine. Palpitations? Women

are

> neurotic. They get palpitations. If it hadn't finally reached the point

> where my feet were too swollen for me to wear shoes and I couldn't sit

> upright in a chair because of the fluid in my abdomen, I might have just

> progressed into liver failure and that would have been " all she wrote " . I

> really, truly did NOT feel sick.

>

> I also had fluid tapped from my abdomen when I was hospitalized. I was

> half out and feeling pretty cheery at the time. I remember saying to

the

> doctors, " Oh, good. You're going to drain all that fluid off my

stomach. "

> They told me that it wouldn't work exactly that way, but that the

swelling

> would go down. Hard telling what else I said, but they all (there were

five

> doctors in all because I actually was in liver failure) stopped by to see

> me and acted like we were great buddies. I must have been a riot. We

> talked about everything except my condition. I get very chummy when I'm

> " out of it. "

>

> When I got home from the hospital the first thing I noticed was that I

> actually have bones in my feet. I hadn't realized that my feet must have

> been swollen for a long, long time. I thought my feet hurt because of

arch

> problems or something. Not only that, but when I was lying down my hip

> bones were prominent, like they used to be, and I could feel my ribs.

I'd

> forgotten that I have ribs. In photos taken a few weeks later, I look

> nearly gaunt. I lost about 35 lbs. in the hospital.

>

> Then, along came Prednisone and Imuran. I became too weak to do more

than

> walk from the bed to the bathroom. Sometimes I'd try to get up and

simply

> collapse back on the bed, unable to even get under the covers. There was

> nausea and diarrhea. Nasal congestion was so severe that I couldn't

> breathe when I was lying flat and I had constant nosebleeds. I began to

> swell up again, like someone was pumping water into me. My legs, which

> have always been very slim, became enormous. My feet were so swollen

they

> frightened people who saw them. Taking a shower was more ordeal than I

> could handle most days and I was afraid to be alone in the bathroom for

> fear I'd fall. On top of all that, there was nightmarish insomnia and

I'd

> lie awake so exhausted I'd cry, yet totally incapable of sleeping. Our

> cats, who I really think are sensitive to illness in humans, never left

my

> side except to eat and go to their litter boxes. I developed severe

muscle

> spasms in my back so that just walking the length of a room became

> incredibly painful and I couldn't take any of the meds that might have

> relieved the pain. In fact, I reacted to all drugs that the doctors gave

> me.

>

> As the months passed, I learned to live with the muscle spasms in my back

> and the leg pain and fatigue. I didn't have acne (I wasn't prone to acne

> as a teen, either) but I did develop little eruptions on my face that to

> me, looked like poison in my system trying to get out. My color was

> ghastly and my eyes were usually swollen half shut. Tiny pinpoint,

> colorless " warts " erupted all over my body. I was covered with bruises

> from unknown sources, and one time I cut my finger (slammed the sliding

> deck door on it) and blood flew all over the kitchen - walls, cupboards,

> floor, everywhere. I didn't even bother to see a doctor to have it

> treated. My voice was so weak it startled everyone who talked to me and

my

> memory was totally shot. I stopped paying bills until we started getting

> shut off notices (I've always handled family finances), then I learned I

> could pay most bills by debit card on the phone. Whew.

>

> I mention all of this because in time it became clear to me that this was

> due to the medications, not the liver disease. Okay, I had to have the

> meds to survive, but I often wondered if it was worth it and there was

also

> the realization that there was no guarantee the meds would do the job

> anyhow. I was, frankly, prepared to die. I began giving things away and

> planning for my husband and nephew after I was " gone. "

>

> Gradually, as Prednisone was reduced, I began to feel better. I just

> re-read my medical records from Scripps this weekend and found a notation

> that I was taken from the high priority transplant category because of my

> " remarkable " response to Prednisone. I now have had a few months of

> remission, but the ascites is increasing.

>

> I can't read my doctors attitudes. I don't know if they really believe

> that I can now take up my bed and walk or if they are trying to convince

me

> that all is well.

>

> I share most of your suspicians. These specialists are

Gastroenterolgists

> and Hepatologists. They are not specialists in autoimmune diseases.

They

> know what probably will work but they don't know why it works for some of

> us and not for others. They know what can go wrong but don't know how to

> predict it. In other words, they can put out wildfires but they can't do

> much else. All of this is further complicated by the fact that the

> majority of GI doctors seem to be men and there is the unfortunate male

> tendency to minimalize complaints they hear from women patients. We are

> perhaps more in touch with changes in our bodies than men, and this is

> misinterpreted by doctors to be indication of some form of feminine

> neurosis. We have to deal on a regular basis with " too little, too

late. "

>

> Research? The best we might hope for right now is that AIH patients will

> benefit as a side effect of research done on other liver and autoimmune

> diseases. The best thing that could happen to us would be if a couple of

> famous male athletes would be diagnosed with AIH. That is a sad reality.

> I notice that many of the Internet medical sites don't even mention AIH.

> Unbelievable.

>

> Here's what is worrying me right now. When I finally got off Prednisone

> completely at the end of last December, I was in so much pain from

apparent

> adrenal insufficiency, I had to go back to 10 mgs. of Prednisone (on

> February 3rd.) At the same time, as the pred was reduced, my feet and

> ankles began to swell. My waist/abdomin measurement was larger than my

> hips used to be. So, I was doubled up on diuretics. Since February,

I've

> been taking 40 mgs. of lasix daily PLUS 20 mgs. of Ameloride. My feet

are

> no longer swollen but the ascites is increasing. But hey, my labs looked

> pretty good last time they were checked (in early April). I do feel okay

> except for a little nausea now and then and sudden overwhelming fatigue

> (when it happens, I stop everything and go to bed, no matter what I'm

doing

> at the time - which is why my posting here is a little inconsistent.)

I've

> never been sensitive to pain and I just live with the muscle and joint

> aches. I scarcely notice them most of the time.

>

> I've lived a very moderate life in most ways. Lots of stress and

emotional

> trauma, but physically, I never have " abused " my body. Never had a

weight

> problem, have drank little or nothing since my " wild " youth, never used

> drugs, scarcely even taken prescription drugs. I don't have problems

with

> depression and in fact, I'm usually quite upbeat and optimistic about

life.

> I work hard because I like to accomplish things. I actually enjoy hard

> work, if that makes sense. So, considering all of that, I got very sick

to

> the point that I was hospitalized and put on a liver transplant list.

Now,

> I'm no longer in raging good health and I'm taking some volatile meds.

Do

> I dare to assume that I'm in some glorious remission that will last for

the

> rest of my normal life span? That seems to be what my Hepatologists

think

> (saw both of them this past month). Or are they whistling in the dark?

Do

> they tell us that everything is wonderful because they don't know one way

> or the other, so settle for pats on the head?

>

> We used to have a dentist in Seattle who we really liked. Besides being

> good at what he did, he was simply a very nice, likeable and charming

man.

> One day his receptionist called us to cancel scheduled appointments.

He'd

> committed suicide. After that, I read that dentists had among the

highest

> suicide rates in the medical profession. The theory was that their

> contacts with patients were almost always negative, because everyone

hates

> going to the dentist. I wonder if it works the same way with GI doctors?

> They deal with liver cancer, AIH, PBC, PSC, colon cancer, etc. All dread

> and potentially fatal diseases. Maybe they train themselves not to

> " connect " with their patients as a form of self preservation? You have

to

> wonder if that's partly why so many of them seem to lack the ability to

> show compassion and to communicate empathetically with their patients.

>

> Enough of all this middle of the night rambling. As usual, sleep beckons

> and here I am fighting it.

>

> Thanks for the information. I'd like to print it out and hit a couple of

> doctors over the head with it. Get a clue, guys. We're not really a

bunch

> of whiners.

>

> Take care,

> Geri

>

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[Guest guest]

Sue,

I don't remember feeling any increased anxiety or restlessness, but I did

have some negative reactions. The worst was giant hives when I was down to

10 mgs. , the lower the dosage, the worse the problem was with muscle and

joint pain and also pain on my left side.

Incidentally, I'm now at 7 mgs. and I'm having more left sided pain than

I've had in months. I've taken 2 Vicoden today and usually I only take one

in the morning, if any at all. Right now it's hurting so much it's

difficult to sit here but it doesn't get much better if I lie down.

However, this time my joint and muscle pain is much less severe than it was

last time I withdrew. It seems to have a different effect on everyone. I

was warned when I first started taking it that it would increase my

insomnia but it actually seemed to reduce it. I was also told it would

probably make me a bit hyperactive (the last thing I need) but it didn't.

If anything, it had a calming influence. Probably because I didn't have so

many aches and pains.

My doctor was doing my lab tests every 2-3 weeks for the past year, but now

he's spacing them months apart which surprises me, since when you're

reducing pred, the danger of a relapse is larger. Oh well, I don't feel

sick and I don't mind not being jabbed so often. I hope that things have

stabilized for you and that your next tests are niced and normal. It

doesn't seem so much to ask, does it?

To my knowledge, I'll never stop taking Imuran. In fact, I was warned that

it could be life threatening to stop taking it. I was also told that it

might have to be increased in time and I assume that will happen if my labs

go up, as an alternative to increasing prednisone. I don't know if

cyclosporin would be prescribed the same way and also, it appears that no

two Hepatologists follow the same procedure. It was my " Aussie " who told

me it's going to be Imuran forever (!)

Take care,

Geri

[Guest guest]

Geri,

I have not experienced any physical things from the reduced pred (as Yet)

and hopefully I won't. Seems to be having more emotional affects at this

stage.

Extremely tired also.

Pain around the liver and shoulder tip pain has started again, I used to

have that all the time, but my doc. put me on slow release morphine and the

pain was then bearable, but today it has really affected me.

I am like you lying down has never been an option for me. It hurts more to

lie down than to sit upright. I sit on an angle so as not to put pressure

on that particular area and that is the only way I am able to get any

relief.

Having these blood tests so regularly my arm is starting to look like a

junkie. How is yours?

I hope you get some relief from your pain and tomorrow is a better one for

you.

SueB.

----------

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

> onelist

> Subject: Re: [ ] reply - prednisone and immunizations

> Date: Tuesday, 25 May 1999 18:23

>

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

>

> Sue,

> I don't remember feeling any increased anxiety or restlessness, but I did

> have some negative reactions. The worst was giant hives when I was down

to

> 10 mgs. , the lower the dosage, the worse the problem was with muscle

and

> joint pain and also pain on my left side.

>

> Incidentally, I'm now at 7 mgs. and I'm having more left sided pain than

> I've had in months. I've taken 2 Vicoden today and usually I only take

one

> in the morning, if any at all. Right now it's hurting so much it's

> difficult to sit here but it doesn't get much better if I lie down.

> However, this time my joint and muscle pain is much less severe than it

was

> last time I withdrew. It seems to have a different effect on everyone.

I

> was warned when I first started taking it that it would increase my

> insomnia but it actually seemed to reduce it. I was also told it would

> probably make me a bit hyperactive (the last thing I need) but it didn't.

> If anything, it had a calming influence. Probably because I didn't have

so

> many aches and pains.

>

> My doctor was doing my lab tests every 2-3 weeks for the past year, but

now

> he's spacing them months apart which surprises me, since when you're

> reducing pred, the danger of a relapse is larger. Oh well, I don't feel

> sick and I don't mind not being jabbed so often. I hope that things have

> stabilized for you and that your next tests are niced and normal. It

> doesn't seem so much to ask, does it?

>

> To my knowledge, I'll never stop taking Imuran. In fact, I was warned

that

> it could be life threatening to stop taking it. I was also told that it

> might have to be increased in time and I assume that will happen if my

labs

> go up, as an alternative to increasing prednisone. I don't know if

> cyclosporin would be prescribed the same way and also, it appears that no

> two Hepatologists follow the same procedure. It was my " Aussie " who told

> me it's going to be Imuran forever (!)

>

> Take care,

> Geri

>

>

>

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

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>

> Try ONElist's Shared Calendar to organize events, meetings and more!

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

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[Guest guest]

Hi Sue,

I've changed my e-mail programs and have had problems all week with lost

messages, etc. Hopefully it's now " fixed " !

I've never experienced apparent emotional effects from prednisone but

several people have mentioned that they have. I was also warned by the

doctor who originally prescribed it that this could happen. My biggest

problems with withdrawal are always physical and myriad. Unfortunately,

it's not possible to predict how long these will last. Currently I'm

concerned because I'm still tapering and I'm guessing that the problems

will get worse as I go lower in dosage. That's what happened last time.

I do have some fatigue but it's not all the time. It seems to be a fickle

drug, causing pain in different places at different times and hurting some

of us in one area and others someplace else. My knees gave out last time

so I could barely walk. This time it's my back with lesser pain other

places. I guess it's the way it lets us know that we've become dependent

on it.

I've never had liver pain but the pain on my left side more than makes up

for it. Couldn't your pain on the right side (liver area) be from your

gall bladder? It seems that gall bladder problems go with liver disease

somehow. Mine simply stopped doing it's thing when I was at my most sick.

It sounds like you're really having a rough time right now, if your doctor

is even giving you morphine. Vicodin always seems to be enough for me,

just once in the morning gets me through most of the day. I also have to

adjust the position I'm sitting in to relieve the pain and it's even worse

when I go to bed when it seems there is no righ position. For me, at

least, pain isn't constant, so I just try to live with it.

Most lab work in Las Vegas is done by labs that are independent from the

doctor's office. Thus, a patient usually doesn't know the phlebologist who

draws blood. One time when I went in for labs the technician asked me

(very disapprovingly) why I had so much scar tissue buildup in my arm. I

think she suspected me of being an IV drug user. Funny. And, a dumb thing

for a lab technician to ask. Luckily, I have good, strong veins and I'm

not much bothered by having blood drawn. However, when I was going through

pre-transplant evaluation, Scripps drew 40 vials of blood in one session.

About 3/4 of the way through they couldn't get any more blood from one arm

and had to switch to the other. I joked that they'd drained me dry, but

the vein simply collapses (not in a dangerous way) and won't give any more.

Other times I've had 10 and 12 vials drawn at a session but these days

they only take 3 or 4. That's a good sign. What a way to measure our

condition!

Hope all is well for you. I'm doing okay, just getting irritated and

impatient at the ups and downs.

Take care,

Geri

[Guest guest]

Geri,

Ruled out the pain coming from the gallbladder, I had it out. I believe

that is what started this whole thing, I think I told you, the doctor that

did the op. clipped two bile ducts while doing the surgery to remove the

gallbladder and the bile leaded internally. Next thing I knew I had AIH.

Seems strange that it happened just after the op. I have never been sick in

my life before that.

The joint pain is new to me, you said you had it before, I never did. Even

typing tends to get harder these days. I'll never stop though.

I have always suffered pain on the right side. My doctor told me originally

that it was strange. But it persisted and my blood pressure showed when I

was in extreme pain. That is when she prescribed the morphine. I refused to

take it for a really long time. But as my GP and Liver specialists

explained to me, quality of life was important and I should take them to

get some peace from the pain. I finally caved into to their pressure and

took them. I did get some relief for a few weeks and everything seemed

bearable, then they started to taper off the pred. and all the added extras

started. The painkillers do not seem to help with the new aches and pains.

From lunch time on I seem to be on a downward spiral.

Why didn't you ever go through with the colonoscopy? I thought everyone

here had convinced you that it was a painless procedure that could give

some answers for you?

SueB.

----------

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

> onelist

> Subject: Re: [ ] reply - prednisone and immunizations

> Date: Friday, 28 May 1999 4:06

>

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

>

> Hi Sue,

> I've changed my e-mail programs and have had problems all week with lost

> messages, etc. Hopefully it's now " fixed " !

>

> I've never experienced apparent emotional effects from prednisone but

> several people have mentioned that they have. I was also warned by the

> doctor who originally prescribed it that this could happen. My biggest

> problems with withdrawal are always physical and myriad. Unfortunately,

> it's not possible to predict how long these will last. Currently I'm

> concerned because I'm still tapering and I'm guessing that the problems

> will get worse as I go lower in dosage. That's what happened last time.

>

> I do have some fatigue but it's not all the time. It seems to be a

fickle

> drug, causing pain in different places at different times and hurting

some

> of us in one area and others someplace else. My knees gave out last time

> so I could barely walk. This time it's my back with lesser pain other

> places. I guess it's the way it lets us know that we've become dependent

> on it.

>

> I've never had liver pain but the pain on my left side more than makes up

> for it. Couldn't your pain on the right side (liver area) be from your

> gall bladder? It seems that gall bladder problems go with liver disease

> somehow. Mine simply stopped doing it's thing when I was at my most

sick.

>

> It sounds like you're really having a rough time right now, if your

doctor

> is even giving you morphine. Vicodin always seems to be enough for me,

> just once in the morning gets me through most of the day. I also have

to

> adjust the position I'm sitting in to relieve the pain and it's even

worse

> when I go to bed when it seems there is no righ position. For me, at

> least, pain isn't constant, so I just try to live with it.

>

> Most lab work in Las Vegas is done by labs that are independent from the

> doctor's office. Thus, a patient usually doesn't know the phlebologist

who

> draws blood. One time when I went in for labs the technician asked me

> (very disapprovingly) why I had so much scar tissue buildup in my arm. I

> think she suspected me of being an IV drug user. Funny. And, a dumb

thing

> for a lab technician to ask. Luckily, I have good, strong veins and I'm

> not much bothered by having blood drawn. However, when I was going

through

> pre-transplant evaluation, Scripps drew 40 vials of blood in one session.

> About 3/4 of the way through they couldn't get any more blood from one

arm

> and had to switch to the other. I joked that they'd drained me dry, but

> the vein simply collapses (not in a dangerous way) and won't give any

more.

> Other times I've had 10 and 12 vials drawn at a session but these days

> they only take 3 or 4. That's a good sign. What a way to measure our

> condition!

>

> Hope all is well for you. I'm doing okay, just getting irritated and

> impatient at the ups and downs.

> Take care,

> Geri

>

>

>

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

> Having difficulty getting " in synch " with list members?

>

> Try ONElist's Shared Calendar to organize events, meetings and more!

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

> Please support the American Liver Foundation!

>

> 1.) To subscribe send e-mail to -subscribeonelist

> 2.) To UNsubscribe send to -unsubscribeonelist

> 3.) Digest e-mail format send to -digestonelist

> 4.) Normal e-mail format send to -normalonelist

[Guest guest]

Sue,

Gall bladder problems are a mystery to me. I had many preconceptions about

them until my Mom almost died when hers became infected. She was never

heavy and one of my misconceptions was that only seriously obese people

developed diseased gall bladders.

<< I think I told you, the doctor that did the op. clipped two bile ducts

while doing the surgery to remove the gallbladder and the bile leaded

internally. >>

That was a rather serious slip of the scalpel! Even if it didn't trigger

the AIH, I can see where it would have caused some major complications.

There are reasons for the joint pain that tie in with liver dysfunction.

Unfortunately, our doctors rarely explain these things to us, if we can

even get them to acknowledge the fact that they're happening. I'm not sure

that they know. When I bring up joint pain I'm always told to see a

Rheumatologist under the assumption that it's arthritis. It could be

arthritis, of course, but you'd think I'd have had it before I started

taking Prednisone. Personally, I think it's precipitated by the liver

disease and complicated by the effects prednisone has on the adrenal system.

As much as I value the information we're sharing with each other within

this group, I resent the fact that this information isn't being provided to

us by our medical caretakers. Sometimes I feel like I'm painfully

extracting little bits and pieces of a puzzle from a series of different

specialists and then it's up to me to tie it all together into something

that makes sense. It's not that ignorance creates fear, but if we could

only understand why these things happen, 90% of our anxiety would be

relieved. It would help if they'd agree with each other, too. When my

Hepatologist refers me to a Rheumatologist then dismisses that doctor's

explanations because she or he isn't a Hepatologist, I want to scream and

punch holes in the wall.

I suspect that internal fluid retention is one of the primary causes of the

pain most of us feel on either our right or our left sides. The major

concern is that it may not be the ONLY cause and since we've all had one

major organ go bad, we can't just shrug off these things.

Your doctors do sound like they are compassionate and concerned in all the

right ways. More of us need physicians who react to our complaints about

pain and who attempt to do something to relieve it. I have a very

difficult time communicating with a doctor when something is hurting me.

It's an unfortunate " dignity " thing that causes me more harm than good. I

suspect that many of us have the same problem.

The downward spiral you mention is similar to what I go through. I think

that the peaks in our day come early, after we take our first meds and as

the day progresses, the effects of the medications decline and so do our

natural reserves, thus we feel worse later in the day. I get through most

days fairly well too, but by late afternoon I'm hurting and in the evening

generally my feet, legs and back are throbbing. Now my hands have become

part of that evening pain cycle.

I didn't have the colonoscopy because I'm giving myself a " break " , more or

less. I've decided that I'm not going to go through any anxiety creating

or painful procedures for awhile, just so I can have a few months of life

that feel mostly normal. I know that the day is going to come again when

I'll have to become a human pincushion again, but not for now. It's not

just pain - it's also a dignity matter. I'm trying to get back my feeling

of being a normal human being. I want to walk vigorously and feel alert.

I guess I want my life back, even if it means I only get to borrow it for

awhile.

Take care,

Geri

[Guest guest]

Geri,

I see both my docs this week, I will run through all these new symptoms

with them and let you know what they come up with.

I never had these joint pains and muscle pain at all before. Even before I

originally got sick I never had them. I totally believe it must be the drop

in pred.

I agree with you. I think all the posting in this group should have copies

sent to our docs. They really would learn alot quicker about our disease.

It is really a sad state of affairs when we can get the necessary

information from this source and these people are supposedly trained to

heal. Years of schooling doesn't seem to give them the insight necessary to

cope with not only the physical side of this disease but the extreme

emotional side affects.

I remember lying in the hospital bed listening to her rattle off all the

side affects of this wonder drug that was going to bring down all my labs.

and I can even remember thinking, Oh yeah, I won't get that. They told me I

could get them, but most people only experience one or two of them.

Looking back I wish I had of quizzed her on these more. I wish I had of

known what I now know about the side affects and of course the disease

(thanks to this group).

I think the very first thing they should do with someone that is diagnosed

with AIH is give them access to a computer and this group, it would save

hours and hours of heartache for some I am sure.

What you said about our peak being in the morning makes a whole lot of

sense to me now that you pointed it out. Even the anxiety thing that I

experience is worse at night. Thanks for the insight.

I think my biggest dream in life at present is to get my life back.

Although I think it could be an impossible dream.

SueB.

----------

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

> onelist

> Subject: Re: [ ] reply - prednisone and immunizations

> Date: Sunday, 30 May 1999 8:05

>

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

>

> Sue,

> Gall bladder problems are a mystery to me. I had many preconceptions

about

> them until my Mom almost died when hers became infected. She was never

> heavy and one of my misconceptions was that only seriously obese people

> developed diseased gall bladders.

>

> << I think I told you, the doctor that did the op. clipped two bile ducts

> while doing the surgery to remove the gallbladder and the bile leaded

> internally. >>

>

> That was a rather serious slip of the scalpel! Even if it didn't

trigger

> the AIH, I can see where it would have caused some major complications.

>

> There are reasons for the joint pain that tie in with liver dysfunction.

> Unfortunately, our doctors rarely explain these things to us, if we can

> even get them to acknowledge the fact that they're happening. I'm not

sure

> that they know. When I bring up joint pain I'm always told to see a

> Rheumatologist under the assumption that it's arthritis. It could be

> arthritis, of course, but you'd think I'd have had it before I started

> taking Prednisone. Personally, I think it's precipitated by the liver

> disease and complicated by the effects prednisone has on the adrenal

system.

>

> As much as I value the information we're sharing with each other within

> this group, I resent the fact that this information isn't being provided

to

> us by our medical caretakers. Sometimes I feel like I'm painfully

> extracting little bits and pieces of a puzzle from a series of different

> specialists and then it's up to me to tie it all together into something

> that makes sense. It's not that ignorance creates fear, but if we could

> only understand why these things happen, 90% of our anxiety would be

> relieved. It would help if they'd agree with each other, too. When my

> Hepatologist refers me to a Rheumatologist then dismisses that doctor's

> explanations because she or he isn't a Hepatologist, I want to scream and

> punch holes in the wall.

>

> I suspect that internal fluid retention is one of the primary causes of

the

> pain most of us feel on either our right or our left sides. The major

> concern is that it may not be the ONLY cause and since we've all had one

> major organ go bad, we can't just shrug off these things.

>

> Your doctors do sound like they are compassionate and concerned in all

the

> right ways. More of us need physicians who react to our complaints about

> pain and who attempt to do something to relieve it. I have a very

> difficult time communicating with a doctor when something is hurting me.

> It's an unfortunate " dignity " thing that causes me more harm than good.

I

> suspect that many of us have the same problem.

>

> The downward spiral you mention is similar to what I go through. I think

> that the peaks in our day come early, after we take our first meds and as

> the day progresses, the effects of the medications decline and so do our

> natural reserves, thus we feel worse later in the day. I get through

most

> days fairly well too, but by late afternoon I'm hurting and in the

evening

> generally my feet, legs and back are throbbing. Now my hands have become

> part of that evening pain cycle.

>

> I didn't have the colonoscopy because I'm giving myself a " break " , more

or

> less. I've decided that I'm not going to go through any anxiety creating

> or painful procedures for awhile, just so I can have a few months of life

> that feel mostly normal. I know that the day is going to come again when

> I'll have to become a human pincushion again, but not for now. It's not

> just pain - it's also a dignity matter. I'm trying to get back my

feeling

> of being a normal human being. I want to walk vigorously and feel alert.

> I guess I want my life back, even if it means I only get to borrow it for

> awhile.

>

> Take care,

> Geri

>

>

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

> Give back to your community through " Grow to Give. "

> http://www.ONElist.com

> See homepage for details.

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

> Please support the American Liver Foundation!

>

> 1.) To subscribe send e-mail to -subscribeonelist

> 2.) To UNsubscribe send to -unsubscribeonelist

> 3.) Digest e-mail format send to -digestonelist

> 4.) Normal e-mail format send to -normalonelist

[Guest guest]

Sue,

I hope your doctor checks you for adrenal insufficiency. So you'll be sure

that the right test is done, the test requires that they first draw blood,

then inject something, then draw blood twice more over a 2 hour period and

measure the changes. That's how they can determine if there's adrenal

insufficiency. I was already back on Prednisone for a couple of weeks when

I was tested and I was still borderline. Right on the normal-low line.

The endocrinologist who did the test told me that there can be problems

still when the test is borderline. One problem that you should be aware of

is that you would be at great risk if you were in an auto accident or

otherwise injured. It's easily taken care of, but unless whoever treats an

accident victim knows that they have adrenal insufficiency, they wouldn't

know to give them the corticosteroids they need to prevent possible fatal

problems. And, why would a doctor in an ER think to check for adrenal

insufficiency?

Here's what's interesting. As my Prednisone was being reduced, I'd

complained to my doctor numerous times about the increasingly debilitating

joint and muscle pain and he had no suggestions and did nothing. Finally,

I told him that I thought I should see a Rheumatologist and he told me that

it was probably a good idea. The Rheumatologist, who prescribes

corticosteroids frequently, immediately wanted to know if I'd been tested

for adrenal insufficiency. When she found out that I hadn't been, she

ordered the test. This troubles me. Why didn't the doctor who has had me

take Prednisone as a course of treatment, not know that the side effects of

withdrawl could be so severe and even dangerous? Or, if he did know, why

didn't he order the test to see if I was having a serious problem. Even

more interesting, the doctor who he considers to be his " mentor " , another

Hepatologist, has actually written a paper on the effects of Prednisone

withdrawal, including adrenal insufficiency. Someone must have fallen

asleep in class.

Unfortunately, medical school teaches " technical " skills but apparently

doesn't teach communication skills. I don't know if it's arrogance that

causes so many doctors to fail to communicate with patients who they may

believe wouldn't comprehend explanations anyway, or if it's indifference.

We need to keep in mind that the doctor -patient relationship is basically

a business contract. We are paying them either directly or through

insurance. We are entitled to receive the service we are paying for. If

we have our autos serviced at a garage where the mechanics are incompetent

or only semi-effective, we go to a different garage. We should do the same

thing with the doctors we see. However, often we have little choice about

which physician we trust with our lives. The insurance companies have seen

to that. Sadly, too many doctors are not capable of dealing with a

patient's emotional needs, though those needs and reactions can have a

major effect on how well a patient does under treatment.

Something is going to have to be done. We're afraid of angering or

alienating our doctors for fear they won't see us anymore and our lives

depend on their treatment. This means that too many doctors are in a

position of power over our lives and as we've all heard, many of them abuse

this power through indifference and/or negligence.

If you're noticing that the best part of your day is the first half, do

like I do. Plan your day around getting things done early then sit back

and baby yourself at night. Not easy for everyone to do, of course,

especially for those with small children. But, if my kids were at home and

were no longer infants, they'd have to adjust to the fact that they would

have to set aside needs and demands until the next morning. Same for

husbands who too often expect that their wives will take care of them and

who have a hard time accepting that things have changed.

I'm going to reformat my hard drive tonight and we have to be out of town

from Wednesday. I could end up offline for several days unless something

miraculous happens and the reinstallation goes without a hitch.

If I don't post for awhile, take care of yourself and I hope that your

doctor listens and acts.

Geri

[Guest guest]

Geri,

I go to my local doc tomorrow and after listening to you I am going to ask

her to have this test done for adrenal insufficiency. One complication I

can do with out.

Have a nice time away. I'll keep you updated when you get back. Thanks for

all the info, I do appreciate it.

SueB.

----------

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

> onelist

> Subject: Re: [ ] reply - prednisone and immunizations

> Date: Monday, 31 May 1999 11:12

>

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

>

> Sue,

> I hope your doctor checks you for adrenal insufficiency. So you'll be

sure

> that the right test is done, the test requires that they first draw

blood,

> then inject something, then draw blood twice more over a 2 hour period

and

> measure the changes. That's how they can determine if there's adrenal

> insufficiency. I was already back on Prednisone for a couple of weeks

when

> I was tested and I was still borderline. Right on the normal-low line.

> The endocrinologist who did the test told me that there can be problems

> still when the test is borderline. One problem that you should be aware

of

> is that you would be at great risk if you were in an auto accident or

> otherwise injured. It's easily taken care of, but unless whoever treats

an

> accident victim knows that they have adrenal insufficiency, they wouldn't

> know to give them the corticosteroids they need to prevent possible fatal

> problems. And, why would a doctor in an ER think to check for adrenal

> insufficiency?

>

> Here's what's interesting. As my Prednisone was being reduced, I'd

> complained to my doctor numerous times about the increasingly

debilitating

> joint and muscle pain and he had no suggestions and did nothing.

Finally,

> I told him that I thought I should see a Rheumatologist and he told me

that

> it was probably a good idea. The Rheumatologist, who prescribes

> corticosteroids frequently, immediately wanted to know if I'd been tested

> for adrenal insufficiency. When she found out that I hadn't been, she

> ordered the test. This troubles me. Why didn't the doctor who has had

me

> take Prednisone as a course of treatment, not know that the side effects

of

> withdrawl could be so severe and even dangerous? Or, if he did know, why

> didn't he order the test to see if I was having a serious problem. Even

> more interesting, the doctor who he considers to be his " mentor " , another

> Hepatologist, has actually written a paper on the effects of Prednisone

> withdrawal, including adrenal insufficiency. Someone must have fallen

> asleep in class.

>

> Unfortunately, medical school teaches " technical " skills but apparently

> doesn't teach communication skills. I don't know if it's arrogance that

> causes so many doctors to fail to communicate with patients who they may

> believe wouldn't comprehend explanations anyway, or if it's indifference.

> We need to keep in mind that the doctor -patient relationship is

basically

> a business contract. We are paying them either directly or through

> insurance. We are entitled to receive the service we are paying for. If

> we have our autos serviced at a garage where the mechanics are

incompetent

> or only semi-effective, we go to a different garage. We should do the

same

> thing with the doctors we see. However, often we have little choice

about

> which physician we trust with our lives. The insurance companies have

seen

> to that. Sadly, too many doctors are not capable of dealing with a

> patient's emotional needs, though those needs and reactions can have a

> major effect on how well a patient does under treatment.

>

> Something is going to have to be done. We're afraid of angering or

> alienating our doctors for fear they won't see us anymore and our lives

> depend on their treatment. This means that too many doctors are in a

> position of power over our lives and as we've all heard, many of them

abuse

> this power through indifference and/or negligence.

>

> If you're noticing that the best part of your day is the first half, do

> like I do. Plan your day around getting things done early then sit back

> and baby yourself at night. Not easy for everyone to do, of course,

> especially for those with small children. But, if my kids were at home

and

> were no longer infants, they'd have to adjust to the fact that they would

> have to set aside needs and demands until the next morning. Same for

> husbands who too often expect that their wives will take care of them and

> who have a hard time accepting that things have changed.

>

> I'm going to reformat my hard drive tonight and we have to be out of town

> from Wednesday. I could end up offline for several days unless something

> miraculous happens and the reinstallation goes without a hitch.

>

> If I don't post for awhile, take care of yourself and I hope that your

> doctor listens and acts.

>

> Geri

>

>

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

> ONElist: where real people with real interests get connected.

>

> Join a new list today!

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

> Please support the American Liver Foundation!

>

> 1.) To subscribe send e-mail to -subscribeonelist

> 2.) To UNsubscribe send to -unsubscribeonelist

> 3.) Digest e-mail format send to -digestonelist

> 4.) Normal e-mail format send to -normalonelist