Re: Re: AHI BEGINNER

[Guest guest]

Hi ,

My thoughts are I really hope you research Meridia before trying to take that

drug. The comercials alone scare me with the warning signs. I have enough

problems with diriheria (forgive spelling). And from my expierience you can " t

fight the predinisone effects anyway. I don " t like takeing pred. but it sure

helps when you need it to.

Gayle

[Guest guest]

Hi ,

I'm sorry you have AIH, but I'm glad you are symptom free. Prednisone should

work fairly quickly to bring your enzymes into the normal range. You can

minimize the problems with long term prednisone use, if you and your doctor

have a game plan for what to do once your enzymes come down. Mine didn't and

I stayed at 20 or above for over 3 years. In hindsight, I'd have been much

better off tapering either off or to a much lower dose. Everyone is

different, so it's important to work with your doc before taking any

supplements or herbs.

Don

AIH Minneapolis

[Guest guest]

Dear , Hi. My name is Jane Totten. I live in Terre Haute, Indiana. I

was diagnosed with AIH after a year of tests and one biopsy. I have been in

remission for over 2 years. Did your Dr. mention starting you on Imuran

after the prednisone? That seems to be the way most of us have been treated.

You will find a lot of friends and a wealth of information from this group.

It was a wonderful feeling when I discovered that I was not alone fighting

this disease. Welcome!!

[Guest guest]

Dear :

Like Jane, I've been in 'drug induced' remission for just about 2 years. I

still have a lot of problems, but most of them are related to prednisone. I

tried to work part time for about 6 months and it just didn't work for me,

although I understand that many have been able to continue working.

Kathy (AIH)

Seattle area

[Guest guest]

Jane since you have been in remission how do you feel? Do you take any

meds. Are you able to work? Are you still tired alot?I am happy to hear

that a 2 yr. remission is possible Good for you

Pa.

[Guest guest]

,

I am 54 and was diagnosed with AIH in August, 1997.

I did manage to beat the weight gain for the first year. Prednisone

increases the appetite and requires a lot of self-restraint. Lots of

water was a help for me. I am an avid cyclist and the exercise helped

also. I have a lot of determination and pushed myself to keep exercising

and build back my strength. I have read that prednisone actually changes

the metabolism so it is tough not to gain weight. Weight control has

always been a problem for me anyway. The doctor also recommended a low

sodium diet while I was taking prednisone. This low sodium diet caused

me to change my eating habits which was a negative in my case. Now that

I am off prednisone and don't have to be on a low sodium diet, I am

having difficulty getting back to my old better eating habits. I need to

be more careful about what I buy at the grocery store ... if I don't buy

it, I can't eat it.

I did not have a bone scan until this year, and it was normal for my

age. It certainly would not hurt to have a bone scan done now ... I had

the expensive scan where they scan both the back and hip bone rather

than the simple test that is less reliable. I also took lots of calcium

.... 1500 mg per day. Weight bearing exercise (walking, running, dancing,

weight lifting, etc.) helps to avoid osteoporosis. I don't smoke anymore

and also cut down on my coffee intake.

I also became depressed when I started the prednisone ... I have a

history of depression and prednisone can be a depressant. I take Zoloft

now. I had lots of problems sleeping at the beginning (I started at 60

mg) and the doctor prescribed trazadone (another antidepressant) which

helped me sleep.

Good luck to you.

MadamFood@... wrote:

>

> DEAR FRIENDS, MY NAME IS JENNY, I LIVE IN CENTRAL INDIANA. AFTER MONTHS &

> MONTHS OF TESTS AND TWO LIVER BIOPSIES THEY HAVE FINALLY GIVEN ME THE GO

> AHEAD TO START PREDNISONE THERAPY.

> (20 MG.A DAY).

> I DON'T HAVE ANY SYMTOMS OF AIH. I JUST HAVE GREATLY ELEVATED LIVER FUNCTION

> TESTS PLUS THE AUTOIMMUNE NUMBERS ARE AT 1200.

>

> I GUESS MY QUESTION IS, WHAT KIND OF SIDE EFFECTS WILL I BE ENCOUNTERING IN

> THE NEAR FUTURE? ARE THERE THINGS I SHOULD DO BEFORE I START THE THERAPY?

> (LIKE PERHAPS A BONE SCAN TO GET A BASE LINE)? ARE THERE WAYS OF BEATING

> THE WEIGHT GAIN? (MAYBE TAKING AN APPETITIE SUPRESSANT LIKE MERIDIA)?

> I AM GOING TO TALK TO MY INTERNEST ON FRIDAY, BUT I WOULD LOVE TO GET SOME

> FIRST HAND INFORMATION FROM YOU " SOLDIERS IN THE FIELD "

> THANKS FOR LISTENING

> JENNY

>

> > 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]

Hi ,

How are you? I'm glad your levels are normal...is ENTOCORT the same thing

as Budesonide? Just curious, because I remember you were taking that for

awhile. Any other side effects?

>From: " .Hutchinson " <brandy.hutchinson@...>

>Reply- onelist

> onelist

>Subject: Re: [ ] Re: AHI BEGINNER

>Date: Thu, 04 Nov 1999 17:01:05 -0800

>

>Hi

>

>i was on predisone for approx. 3 years, nothing could stop the weight

>gain, even eating right I've gained approx. 50lbs.

>

>Anyways I finally changed to a drug called entocort, and since this I

>have had normal liver tests and lost 9lbs so far, and it i start eating

>right again i'm sure all lose more weight faster. I also feel much

>better.

>

>

>

>

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

>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

><< text3.html >>

[Guest guest]

brandy,

This is the first that I have heard of Entocort (Budesonide) used for AIH.

(My dad uses it for his emphesema) Did your doctor put you on this drug

before or after your numbers were down? Why did he decide to go this route

instead of Imuran? I'm glad to hear the drug is working for you.

[Guest guest]

:

I would definitely go for a baseline bone scan. In fact, my hepatologist told

me to get one before I started the Prednisone.

One of the first side effects that I got from the Prednisone was a feeling of

euphoria and an immense amount of energy. Felt good for a few weeks. After

that I had a virus for two months and the energy never came back.

I have no clue about how to stop the weight gain as I have had major problems

with that one. I don't think taking diet pills is a good idea, but ask your

doctor. I don't let anything pass these lips without checking, especially

over-the-counter medications. I am afraid of damaging my liver more.

I am sure you will get more advice from other members of this list who have been

dealing with AIH for a much longer period.

Try not to be frightened. We are all here to help each other and this is a

fantastic group.

Good luck and God Bless.

Warmly,

[Guest guest]

Hi,

until I found this group I felt so lost. This group has helped me to

understand my own reality and how to understand how to deal with each day. My

hospital offers a support group every 2nd and fourth Monday of each month.

Seems to always hit on my clinic days and I can " t go to them. The strength I

find in this group is tremendous in my healing proccess, besides being able

to talk to you all every day at all hours. Another plus in this support group

is my family was going nuts having to listen to me every day. You should all

give yourselves a pat on the back, for knitting together a very powerfull

group to lean on.

Gayle

[Guest guest]

Hi

i was on predisone for approx. 3 years, nothing could stop the weight

gain, even eating right I've gained approx. 50lbs.

Anyways I finally changed to a drug called entocort, and since this I

have had normal liver tests and lost 9lbs so far, and it i start eating

right again i'm sure all lose more weight faster. I also feel much

better.

[Guest guest]

Dear ,

I am going to make a copy of your posting and keep it. I will show it to my

Doctor and ask him to research this drug. Thanks for sharing your experience.

Yes, my name is really . I just wish the other would

straighten up her act. ha ha I usually say my name is when I

am in the company of stranger, but you guys certainly are not strangers!!

fondly,

[Guest guest]

Thanks ,

I am going to start taking the prednisone (20 mg.) tomorrow. 20 mg. isn't a

very high dosage is it? I don't want to be a " Drama Queen " , but I do have

some anxioty about it. I let you know how it goes. Also, I just purchased a

book from Amazon.com called Coping with Prednisone by Eugenia Zuckerman and

R. Ingelfinger, M.D.

It has some good info in it.

hope every body has a good weekend

[Guest guest]

Is your real name?? lol

Entocort (budisonde) is not to replace imuran, it is also a steroid it

is to replace the predisone.

I had found a article a year prior on the american liver foundation site

about new treatments and it was entocort.

the predisonne and imuran were not working any longer my numbers

regardless were always rising and getting worse, intact because of the

test rising he thought I was miss diagnosed.

I had a list full of side effects from the drugs, the first two years

were ok and i responded well but for some reason i was getting every

side effect with no results.

We tried to go off imuran and just leave the predisone and it worked for

a month and test came down the next month they went back up. etc..

I kept bugging about this drug, He researched it a bit and one day gave

me samples, the plan to take three entocort (the max) and 1/2 of

predisonse, and 50mgs of imuran, go off my diuretic, because it was

driving me nuts (peeing all the time) So i started it, got I felt

ssoooooooo much better, at least 50% of all symptoms went away. At my

appointment one month later the results were not good, i was feeling

better but the test were still rising (almost in the 300's) which told

me I had about six hundred points to go since that's how high they were

when i got sick! (my logic) don't worry if u don't understand. And I

had not gained anymore weight, prior to this I gained 3-4pounds every

month. He said i had to go off of it, it was to risky. My face must

off made him think a bit, I wanted nothing more then to stay off

predisone or take the least amount possible. (and nothing was working

anyways) Somewhere in the entocort research it says it can take up to 8

weeks to work. So we made a deal, if there was no change in 4 more

weeks I would have to take massive doses off predisone, because things

were not looking good!

Well 4 weeks later the test were slightly above

normal!!!!!!!!!!!!!!!!!!!!!!! And I felt soooo good. He took me off

predisone and dropped the entocort to 2 a day. 4 WEEKS LATER MY TESTS

WERE NORMAL!!! and he put me on 2 entorcort every other day, and a month

later one every other day.

Entocort is a steroid but unlike predisone it does not travel through ur

blood stream, which means half the side effects!!!!

So now i take 1 entocort every other day, 1 imuran a day, and a pill

like zantac because the side effect i experience is nausea (really bad)

with entocort and the zantac works well I take it 2 times a day.

I have lost 9lbs and I still eat the crappie food!!oops I have no

appetite most of the day! So I have to make myself eat, and most of the

time it's a bad choice. I still get tired, but i can make it through a

whole day, and I get the odd migraine.

I feel80% normal and i'm loosing the weight with no effort, Just think

when I make an effort!!!

Take care

[Guest guest]

Hi

Same thing entocort is the brand name for budisonde Just easier for me

to spell!!!

Nausea seems to be the biggest side effect and loss of appetite lol

which I take a pill for nausea and hey I'm fine without eating all the

time 3 years of doing nothing but, I'm do for a break lol

[Guest guest]

lol

Hello

If you have any other questions, just ask and all try to answer them

Take care

[Guest guest]

Hi

When I was put on predisone at 7 tabs so 35mgs and cut down very fast, i

always felt high, on anything over 20mgs

lol that was the best part! I know that every week they cut it down 1/2

tab until i was at the lowest doses possible for me.

[Guest guest]

,

20 mgs. of Prednisone didn't sound like much to me since I started on 40

then quickly dropped to 30 for awhile, then stayed at 20 mgs. for a long

time. However, for long term Prednisone patients, it is a high dosage and

hopefully you will be gradually reduced down to a level that will help you

stay stable while causing minimal side effects. There is a potential for

some serious side effects and some of them can happen even after brief

usage. However, I think that those are exceptional. Long term has other

dangers. If you aren't already, you should start taking Calcium with

Vitamin D (and some say you also need magnesium). Viactiv is a palatable

source if you don't have diabetes and if you do like the taste of chocolate

caramels. Prednisone can cause bone density loss in people of either

gender and at all ages. For some reason, all doctors don't think to do a

bone density test (I had one during pre-transplant evaluation but no one

bothered to test again for two years - and by then I'd developed

osteoporosis.) Your regular lab tests will screen for elevated glucose and

cholesterol, which can happen, or at least is a problem I have. However,

these are usually temporary elevations and you need to have fasting glucose

tests to be certain you don't have diabetes. My glucose is always elevated

except when I have fasting tests. Then it's always normal.

Also, you need to have periodic checks for cataracts and glaucoma and you

should have your teeth checked because of negative effect

possibilities. If no one has told you, when you are taking Prednisone you

are at much higher risk for infection and you should always take

antibiotics before you have any dental work done, even having your teeth

cleaned. No big deal - I just take 4 caps of something or other an hour

and a half before I see the dentist.

These are just safeguards and it doesn't mean that you are in dire

danger. Probably your doctor will give you all of these warnings, but it

doesn't hurt to know in advance if you haven't been informed yet.

The side effects of Prednisone like moon face, weight gain, skin problems,

facial hair, etc., don't happen to everyone and when they do, they aren't

permanent. As the drug is reduced, the side effects gradually

disappear. My facial hair and moon face went first - Hallelujah!

Take care,

Geri

[Guest guest]

Dear ,

You asked about the itching and someone else has probably already answered

your questions. I had problems with itching before I started the meds and

for awhile afterwards, but as my condition stabilized and I went into

remission, the itching went away. Many in this group have an ongoing

problem with it, but I think that it's related somehow to bile duct

blockages or bile in the system. I only had that problem when my liver

wasn't functioning well enough to make my gallbladder and bile ducts

function properly. They were " cannulated " while I was in the hospital,

which in my mind I visualize as running a rod through a tube to clear

it. Whatever, it got rid of about 32 lbs. of fluid in my system in just 5

days. I did not have a real blockage, maybe just something like

" sludge " ? Whatever, it wasn't one of my own major problems. That's kind

of a convoluted way to say that itching is caused by the disease. However,

I'm sure it's also possible to have a reaction to the meds that could make

you itch.

Actually, Prednisone supposedly masks pain, so if your joints are aching,

it's probably from the disease. However, if you are too rapidly withdrawn

from pred, it can cause adrenal insufficiency which translates to joint and

muscle pain and fatigue. When I was on relatively high doses of Prednisone

I had very painful muscle spasms in my back and legs. In fact, the muscles

in my back were rock hard. As the pred was reduced, the pain got worse and

my knees were so severely involved I could hardly walk. When the pred was

increased again, the pain basically went away. Like balancing on a

seesaw. Now, on 5 mgs. daily, I have mostly leg, hip and back pain but it

could be due to another problem, possible side effect of long term

Prednisone use. That will be checked out sometime towards the end of

November, I hope, when I see an Orthopedic Surgeon.

I also take Imuran. I've taken 50 mgs. daily for almost 2 years. At first

I took it all at once and I had a big problem with nausea. After I started

splitting it up, half in the morning and half at night, and added 2

Prilosec daily to the mix, the nausea stopped. I felt VERY sick when I

first started taking Imuran and Prednisone. Fatigue was almost crippling

so I could barely drag myself out of bed. It took a little over 6 months

before I went into remission and though I never have felt exactly normal

again, I still lead a relatively " normal " life. You probably won't find me

doing any long hikes or climbing mountains though. I've simply cut down on

my self expectations.

There aren't many pluses to all of this, but eventually life does resume a

normal rhythm for most of us. It's just a matter of standing back and

regrouping. Some nights after dinner my husband and I sit back in our

respective loungers and moan and groan about our aches and pains, then

laugh at ourselves. If you don't laugh, there's nothing left to do but cry

and laughing is easier and more fun.

Take care,

Geri

[Guest guest]

,

By all means, do ask for a baseline bone scan as soon as possible. The

risk for bone density loss for Prednisone users is relatively high. It

took me just a year and a half on Prednisone to develop

osteoporosis. Then, you will want to have a follow-up in about a year or

even sooner, just to be safe and depending on any risk factors (like

genetics, age, whether you've taken hormones, etc.) Not all doctors seem

to think about this risk.

Take care,

Geri

[Guest guest]

In a message dated 11/7/1999 3:53:40 AM Eastern Standard Time,

spangs@... writes:

<< If no one has told you, when you are taking Prednisone you

are at much higher risk for infection and you should always take

antibiotics before you have any dental work done, even having your teeth

cleaned. No big deal - I just take 4 caps of something or other an hour

and a half before I see the dentist. >>

Geri,

The American Heart Association had better be told if this is true! They are

the ones who tell dentists who to premed, and people taking pred or having

autoimmune diseases ARE NOT on the list! I've also never had a patient tell

me that their MD wanted them premedicated for this. It makes sense to me

though.

I love your idea about writing letters to " the powers that be " regarding the

negligence of making these diseases known! I'll work on mine.

I did get very mad in Miami, and even demanded to be seen by another doctor

that day. Unfortunately all of the liver doctors were at a convention! The

head of the customer service department assured me I wouldn't have to wait

long, but the chances of getting another Friday soon are probably pretty

slim. I'll probably have to take time off work to be seen in a timely

manner, and my bosses will be REAL mad about that. Oh well.

Hugs,

[Guest guest]

Dear Geri, or anyone else,

I really appreciate it that you wrote back.

Maybe you could answer something else. I started taking the Pred. yesterday

morning. During the day, the only side effect I had was the feeling of

slight " crabbiness " and maybe a slight feeling like I was taking a diet

pill. To my suprise, I

slept well last night. Today, I didn't have any side effects from the Pred.

(20mg.)

Question 1 do you think it's because I am only taking 20 mg.?

2 or is it something that doesn't effect you until it builds

up in you system after a few days?

Believe me, I am not griping, just a little mystified.

thanks,

[Guest guest]

,

I never had a problem sleeping taking the pred and I started at 30 milligrams

and was weened down to 10 now.

It took a while for my face to get puffy and the acne to start, but the acne

is gone now at 10 and I think my face is not as puffy. When I looked in the

mirror for a while, I felt like I was looking at a stranger.

My last blood test my enzymes were just slightly elevated. I hope that

doesn't mean up the pred since the side effects are now much better.

Audra

AIH

[Guest guest]

,

A hint of the potential danger to dental patients (not just those on

Prednisone) showed up during the NYPD Blue episodes, when what's-his-name

was dying and they didn't know what why. Mention was made about recent

dental work.

I don't recall the medical explanation, but there is a particularly

virulent form of infection that can rapidly kill and can occur coincidental

to something as mundane as having teeth cleaned. I'll bet Joanne has some

info on that!

I don't think the problem is that people on Prednisone are more prone to

infection (though we are) but the problem is that we have no immunity to

infection because we are taking immunosuppressive drugs. Not just

Prednisone, but most of us are also taking Imuran. We literally do not

have an active immune system. So, a minor infection to most people can be

catastrophic for us.

Part of my pre-transplant evaluation and medical work-up was an order for a

Panalog X-ray of my mouth. Scripps gave me written instructions to give to

my dentist, telling them to send the X-ray to them and not to perform any

dental work including cleaning, before they were given the

go-ahead. Because we were new in Las Vegas and didn't have a local

dentist, I had to locate one who was familiar with treating people who are

taking immunosuppressives. He prescribed antibiotics that must be taken

before I have any work done.

I've also heard what someone else mentioned, that people with heart disease

must be especially careful as well as those of us with suppressed immune

systems. It's not the liver disease that makes us vulnerable, it's the

medications we are taking.

The other potential risk is cat bites - not scratches necessarily, but

bites. I had my one frightening experience and not all cats carry whatever

the dangerous bacteria is, but you don't get second chances if the wrong

cat bites you. Apparently not everyone is susceptible to this danger. I'm

one of those who is and the two doctors who saw me when I developed a very

dangerous infection from a tiny nick in my skin clearly felt that my life

was in danger if they couldn't control the infection immediately.

Just yesterday Schuyler the Magnificent, my alpha cat, snagged my wrist

again. One of his fangs barely broke the surface of my skin but

immediately it turned bright red, burned, itched and started to swell. I

ran for the Neosporin and rubbed it into the cut HARD. Within 15 minutes

the inflammation began to subside, but if it hadn't, I would have had to

rush to the ER. One of my doctors said that they see 5 or 6 cases yearly,

where people have to be hospitalized for minor cat bites. Apparently, it's

not always possible to stop the deadly spread of infection even in the

hospital, and it's not just people taking immunosuppressants who are in

danger.

Just another couple of life hazards to worry about.

I'll be curious to see how quickly they get you in to see a doctor in

Miami. That seems all wrong that you should have to miss work again

because someone didn't bother to let you know that the doctor wasn't going

to keep his appointment. Some doctors bill patients for missed

appointments. Maybe patients should start doing the same thing? (Just

joking, but you know what I mean.)

Take care,

Geri

[Guest guest]

,

Just getting ready to rush out to dinner, which is always a waste of time

and money since I never eat much at one sitting anymore. But, I wanted to

at least give you the benefit of my own Prednisone experience as related to

sleeping and pain.

I also suddenly stopped having insomnia after I started taking Prednisone,

like someone had flipped switch. It didn't happen right away, though. It

took a few weeks. One night I went to bed and like magic, I fell asleep

and slept all night. For the first time in a year or more. I haven't had

" real " insomnia again, no matter what dosage of Prednisone I'm taking. I

believe that liver disease itself, perhaps the accompanying inflammation of

the liver and the general way it affects all body functions, causes sleep

disorders. Prednisone basically brings the inflammation and worst

immediate effects into control. Imuran halts or slows the autoimmune

process, which is why we need both. Prednisone is also an

immunosuppressive, but it's not enough alone to stop organ rejection for

many of us.

About pain, after I'd been completely weaned off pred and was a barely

walking semi-basket case, I went back on 10 mgs. daily and the pain was

almost totally gone. I felt great. Ready to go on with life like nothing

had ever happened. I told my doctor about how great I felt and he told me

that I was experiencing " Prednisone high " . Damn! I thought I'd been cured.

As I started the tapering down again, the pain returned. Be careful. It's

not always just less Prednisone that causes pain reduction. For some few

people, there are other complications that can be causing increased

pain. Prednisone is not always the culprit. You are susceptible to other

autoimmune diseases now, like Rheumatoid Arthritis or Lupus. Once your

system starts attacking itself, it can get on a roll and decide to try it's

tricks on other parts of your body. For that reason, among others, remind

your doctor to do those bone density tests and include Lupus and RA tests

in your labs occasionally. Better safe than sorry. What I try to bear in

mind that there are those of us here who are having serious problems and

then how many (?) out there who are breezing right through this thing

without complications. Any one of us could turn out to be one of them.

In my experience, Prednisone has a build-up effect. The longer you take

it, the more you notice obvious effects, both positive and negative. It

probably depends on the dosage and how long you take higher levels. You'll

have a million questions as time goes along, some you don't even anticipate

now. Lucky for all of us that we have this resource for the uncountable

treasure of the experience and compassion this group offers.

Take care,

Geri