Re: GGTP

[Guest guest]

Geri, thanks for your note. I reduced in one leap from 10mgs to 5mgs. I

asked my doctor is there was better success in reduction going in smaller

increments and he said no. He believes your prednisone threshold is your

threshold no matter what pace you take to get there. The only difference the

reduction makes is the amount of side effects in reducing. Going from 15 to

10mgs I felt the aching in my body, almost flu-like symptoms. We'll see if I

get that again. The reduction symptoms usually kick in a week after I've

reduced and last about a week and then I feel better.

I'll keep you posted.

Best, Roxanne

[Guest guest]

Hi everyone!

I have to agree with on reducing the prednisone. I'm one of those who

can't go down any faster than 1/2 a mg a month. I was unable to get below

7.5 and ended up having to go back to 8 after a failed attempt at 7.

I've had one bone scan so far, and need to schedule another one soon. My

doctor is adamant about getting them regularly and also about supplementing

calcium. It is a very important factor for those on prednisone.

Kathy (AIH)

Seattle area

[Guest guest]

On Mon, 26 Apr 1999 CREE8V1@... wrote:

>Geri, thanks for your note. I reduced in one leap from 10mgs to 5mgs. I

>asked my doctor is there was better success in reduction going in smaller

>increments and he said no. He believes your prednisone threshold is your

>threshold no matter what pace you take to get there. The only difference the

>reduction makes is the amount of side effects in reducing. Going from 15 to

>10mgs I felt the aching in my body, almost flu-like symptoms. We'll see if I

>get that again. The reduction symptoms usually kick in a week after I've

>reduced and last about a week and then I feel better.

>I'll keep you posted.

I had to jump in and respond here. I have lupus and am a moderator for a

lupus list. Many of us deal with the same sorts of meds and the standard

procedure of reducing pred after long term use is 1/2 mg every week --

less if your body just can't do it. A sharp reduction in predisone is

leaving you open to the horrible side effects.

An example of the reduction is the first week you go 10-9-10-9-10-9-10,

then 9-9-9-9-9-9-9, then 9-8-9..... you get the picture. Many folks have

been on pred so long that there is no way they can reduce at this speed.

I've known people to reduce as little as 1/2 mg PER MONTH. And then of

course, there are those with adrenal insufficiency who must take it since

their body can't make it any more.

What is important with predisone is to reduce to a minumum working dose

(if you can't get off it), to make sure you're getting your calcium

and vitamin D to counteract bone loss, and to get a check on bone loss

periodically (esp if you're female). I haven't noticed much discussion on

this topic on the list and it is SOOOOO important.

For me, 10 mg was when I had the worst side effects getting the doseage

down.

L. tlcarter@...

ville (near Knoxville), Tennessee, USA

" We are the music makers, and we are the dreamers of dreams. "

Lupie - waiting for diagnosis of lupoid liver or AIH

[Guest guest]

Roxanne,

I started the decrease from 20 mgs. of pred, which I'd taken for several

months, at the rate of 1 mg. every two weeks. I've been told since then

that even that was too rapid. When I got down to 10 mgs., I began to have

problems and by the time I was at zero mgs., I was in so much pain I could

barely walk, besides experiencing severe fatigue. It didn't come on at

once, but instead I began having increasing joint and muscle pain and

weakness. I didn't tie it in with the pred withdrawal, but after several

weeks of pain I woke one morning with my knees so weak I couldn't stand

from a sitting position or bend my knees at all without help. No strength

and considerable pain.

I told my Hepatologist who didn't seem to have a theory about why it was

happening so there was no reason to suspect rapid pred withdrawal.

However, when I saw a Rheumatologist her first question was whether I'd had

an adrenal insufficiency test. I hadn't. Without waiting for the results

of the test, she told me to immediately start back on prednisone at the

rate of 10 mgs. per week. It took just 3 days before the pain was

basically gone and I actually felt the best I had since before I'd

originally started the decrease.

Since restarting, I tried to taper down again. Got down to 8 mgs., began

feeling leg (especially knees) pain and weakness, so I increased back to 9

mgs. I'm STILL having more pain than I was when I was taking 10 mgs.

I understand that some people can't tolerate withdrawal from prednisone

because their bodies don't take over natural adrenal function. I may be

one of those people.

I've discussed this issue with both my Rheumatologist and an

Endocrinologist who did the adrenal insufficiency tests. I've also had

some input from other doctors and from web pages on the subject.

I was told that 7.5 mgs. of prednisone equals the body's natural amount of

adrenal secretion. When we're getting more than that artificially (through

corticosteroids) the body stops supplying it to us and lets prednisone take

over. Thus, anytime we drop from more than 7.5 mgs. of pred to less than

7.5 mgs., rapidly, our bodies have to " catch up " . This doesn't happen

immediately, thus the aches and pains, among other negative reactions. The

larger the drop, the bigger the reaction, which makes sense. It can take

weeks, months or even up to a year for the bodies natural adrenal functions

to recover.

For reasons I don't understand, I was also told that some people can get by

on 5 mgs. of prednisone. I'm guessing that's enough to make up for whatever

our bodies fail to create after we've gone through prednisone withdrawal.

Several doctors have told me that at 10 mgs. and less most of the side

effects from prednisone will eventually disappear, but that doesn't happen

overnight. Up to a year, in fact, might be a more realistic time frame.

But, beyond aches and pains, there are some serious possibilities from

rapid prednisone withdrawal and subsequent adrenal insufficiency. If your

body were to experience trauma (even something as minor as a tooth

extraction) or you are under unusual stress, it could become a life

threatening condition if you aren't treated with corticosteroids to make up

for what your body is lacking.

When I was tested a couple of weeks after I'd resumed taking prednisone (10

mgs.), I showed borderline normal, i.e., in the normal range but on the

edge. The endocrinologist told me that this meant that I was STILL in

danger of having serious problems in the event of trauma.

I have a file that I downloaded from Internet on adrenal insufficiency I

can send you if you'd like. It explains all of this better than I can.

All of the above aside, though, some people apparently don't have big

problems with adrenal insufficiency and rapid withdrawal. But, who wants

to find out the hard way that they do have problems?

I see that others have posted on the same subject and they've been through

it more often than I have so they know what they're talking about. I'm

going to follow their advice and begin reduction at just 1/2 mgs. per

month, but if the pain continues or gets worse, I'll live with the

prednisone. It's not worth it to me to give up most quality of life for

the sake of a little less body fat!

Hope I've given you some helpful information.

Take care,

Geri

[Guest guest]

,

Thanks for the information on a prednisone withdrawal schedule. I've been

taking prednisone since January, 1998. I don't know if that qualifies as

long-term?

I'm going to try the schedule you suggested to see if it works for me. It

makes sense. I've been splitting up my dosage, taking 5 mgs. in the AM and

4 mgs. in the PM, hoping that this would take me through an entire day,

since previously, aches and pains would increase as the day progressed. I

told my doctor that I was doing this and he didn't seem to have a problem

with it but I don't think that he's that knowledgeable about the side

effects of the drug. Maybe I shouldn't be splitting it... any opinions?

Also, I take both Vit. D and calcium but I'm not sure if the dosage is

adequate. What's recommended?

For me, 10 mgs. seems to have been some breaking point also, but I'm

hopeful I can get below that.

Take care,

Geri

[Guest guest]

I only change the dosage of my meds when the dr. tells me to. Im

afraid that I'll mess up any progress I've made so I just deal with

the pain if it means I take less prednisone whatever the dr. tells

me.

[Guest guest]

QUESTION TO ALL:

Do you control how much and when you want to reduce your prednisone? Alot of

notes I get the expression that you control the reducing and increasing of

the medicine. I just was wondering.

I do what the doctors tell me to and don't change the medicine unless they

tell me to.

Sue AIH

WI

[Guest guest]

Dear Sue in WI:

I always check with my doctor about the prednisone. I know I am the 'keeper

of the pills', but it is important for him to know that I am following

instructions. When I increased recently, I had his OK to go as high as 8.5

if I needed to. I've been holding at 8 to see if I can handle it there, but

will go up if I need to. I think it's important to keep communication open.

Kathy (AIH)

Seattle area

[Guest guest]

Kathy:

I was just wondering. I guess I have been reading the notes wrong. Like I

said I wouldn't change and if I had a big problem I would call Mayo Clinic

over calling my doctor at home.

Sue AIH

WI

[Guest guest]

I guess I'm getting the expression that the prednisone was controlled by the

patient. I just couldn't understand why you would change it so I thought I

would see if I was reading the messages wrong. I guess I was.

Sue AIH

WI

[Guest guest]

On Mon, 26 Apr 1999, Geri and Bob Spang wrote:

>Thanks for the information on a prednisone withdrawal schedule. I've been

>taking prednisone since January, 1998. I don't know if that qualifies as

>long-term?

Personally, anything longer than a dose pack is long term to me (and my

family who has to suffer the personality side effects). <grin>

>I'm going to try the schedule you suggested to see if it works for me. It

>makes sense. I've been splitting up my dosage, taking 5 mgs. in the AM and

>4 mgs. in the PM, hoping that this would take me through an entire day,

>since previously, aches and pains would increase as the day progressed. I

>told my doctor that I was doing this and he didn't seem to have a problem

>with it but I don't think that he's that knowledgeable about the side

>effects of the drug. Maybe I shouldn't be splitting it... any opinions?

I used to split mine - due to rheum's orders - half in am, half at lunch.

If I took it too late I had screaming insomnia.

>Also, I take both Vit. D and calcium but I'm not sure if the dosage is

>adequate. What's recommended?

DOn't hold me to these numbers (working off the top of my head), but I

THINK it's 1200 mgs of calcium. I will get the numbers and forward them

to the list.

L. tlcarter@...

ville (near Knoxville), Tennessee, USA

" We are the music makers, and we are the dreamers of dreams. "

[Guest guest]

Sue,

I've followed my doctor's instructions to the letter until the last few

months. When I was having considerable left-side pain I mentioned it to my

Internist and she told me to ask my Hepatologist if it wasn't time for me

to take something more aggressive than Pepcid, like Prilosec. At first he

was reluctant, but he did prescribe it for me. Later, when the pain

started to increase I asked him if I could double the amount I was taking.

He agreed.

Then there was the fiasco with Prednisone, when he had me reduce my dosage

very rapidly and the result at -0- mgs was almost immobilizing. I

repeatedly told him about the increasing pain and finally told him I was

going to see a Rheumatologist about it. He agreed that was a good idea.

The Rheumatologist told me that I must start taking Prednisone again (10

mgs. daily) and that she'd write the prescription herself. However, she

asked me to confirm with my Hepatologist that starting back on Prednisone

wouldn't be harmful. He agreed it was okay to start back at 10 mgs., so I

did and at the same time it was determined I had adrenal insufficiency

from too rapid withdrawal from Prednisone.

Since then I've told my doctor that I want to try to reduce the pred again

but at a slower pace. He only said, " yes, take it slowly. " So, I asked

him if reducing by 1 mg. per month was okay and he said it was. Now I'm

down to 9 and having joint pain again. I wonder if my adrenal system is

now out of whack from the ups and downs of corticosteroids. Probably I'll

have to see the Endocrinologist again to figure that out.

In my case at least, though, it's important to bear in mind that I'm in

remission and my labs are now nearly normal. Also, it may not be as urgent

to follow a strict regimen on lower doses (though adrenal insufficiency is

nothing to sneeze at.)

From the start I knew that neither of the Hepatologists I've been seeing

(they work together, but are in two different cities) planned on keeping me

on Prednisone for any longer than absolutely necessary. Their preference is

to control AIH with Imuran if it is sufficient, and instead of increasing

the Pred, I expect them to decide to increase the Imuran if my labs go up

again.

I think that every patient has different needs and different side effects

from the drugs. No two of our conditions seem to be completely alike.

Also, the length of time you've been taking these potent meds probably is a

factor that they consider, since they assume that after more than a year

I'm a little familiar with changes in my condition.

So, though I change my dosage, it's only after I've asked my doctor if it's

okay.

Hope this helps.

Take care,

Geri

[Guest guest]

Hi Sue,

My PCP and I discuss both dosage and tapering rate, but he has always left

it up to me. We have discussed what to do if the taper causes too many

symptoms, so we are both comfortable that I will do what is best at the

time.

Don (AIH / Mpls)

[Guest guest]

My doctor was " suggesting " I reduce the prednisone for 2-3 months before I

agreed

to do that. I was at 10 mg and had not been successful in going off in June of

1998. I was having difficulties with my anti-depressants and didn't want to

change too many medications at once.

He then wanted me to go off with 2.5 mg drops. Based on the information I had

obtained in this group, I wrote him a letter suggesting I drop it at 1 mg per

month and also increase the Imuran as my weight had increased. He agreed to

this.

I don't have face-to-face meetings with my doctor very often. He doesn't think

observing me physically is needed nor does he think it is necessary for me to

come to his office to discuss the latest blood test and be handed a

prescription.

I appreciate this attitude.

I get copies of all my blood test results and chart them with a spreadsheet.

Last

June this was very helpful, as I could project that dropping the prednisone was

not working before the doctor realized it. When I showed him the trend, he

immediately stopped the reduction, and then increased the prednisone based on

the

next blood test results.

Overall, I do what the doctor says. I don't change what I am taking without

discussing any change with the doctor first.

Roselle50@... wrote:

> From: Roselle50@...

>

> QUESTION TO ALL:

>

> Do you control how much and when you want to reduce your prednisone? Alot of

> notes I get the expression that you control the reducing and increasing of

> the medicine. I just was wondering.

>

> I do what the doctors tell me to and don't change the medicine unless they

> tell me to.

>

> Sue AIH

> WI

>

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[Guest guest]

[ ] Re: GGTP

>From: Roselle50@...

>

>QUESTION TO ALL:

>

>Do you control how much and when you want to reduce your prednisone? Alot

of

>notes I get the expression that you control the reducing and increasing of

>the medicine. I just was wondering.

>

>I do what the doctors tell me to and don't change the medicine unless they

>tell me to.

>

>Sue AIH

>WI

>

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

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>

>Because of ONElist's reliable service and live customer support!

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

>Help someone you may know and love

>Be an Organ Donor!

>Please support the American Liver Foundation.

>

[Guest guest]

[ ] Re: GGTP

>From: Roselle50@...

>

>I guess I'm getting the expression that the prednisone was controlled by

the

>patient. I just couldn't understand why you would change it so I thought I

>would see if I was reading the messages wrong. I guess I was.

>

>Sue AIH

>WI

>

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[Guest guest]

Sue

My doctors ask me what I like to do they give me a choice usually and

then I pick!! we make deals sort off!!

[Guest guest]

Roselle50@... wrote:

>

> From: Roselle50@...

>

> QUESTION TO ALL:

>

> Do you control how much and when you want to reduce your prednisone? Alot of

> notes I get the expression that you control the reducing and increasing of

> the medicine. I just was wondering.

>

> I do what the doctors tell me to and don't change the medicine unless they

> tell me to.

>

> Sue AIH

> WI

>

I have been wondering the same thing.

[Guest guest]

Tracey,

Today I started the same schedule you used, except maybe slightly

different. I've set it up to alternate between 9 mgs. one day and 8 the

next, but I just take it once a day, in the morning (such as it is -

because of insomnia, I don't really wake up in the morning in the usual

sense of things). I felt pretty good today. Far fewer muscle and joint

pains, but tonight I'm aches and pains all over, mostly back, legs and

hips. Since I don't do much in the evening except clean up after dinner

and read or watch TV, I can live with those extra pains. I REALLY hope I

can work this out. Starting next Wednesday, I'll try going 8/7/6/7/6/7/8

and reduce weekly from there, or is that more quickly than you were told to

do it?

I'm taking 1200 mgs. of calcium and have been for months. For the first 6

months I didn't take any vitamins at all. I know that I was told I should

but I was too befuddled half the time to get around to it. I'm also taking

vitamin D, 400 mgs., I think. There's lots of osteoporosis and

degenerative arthritis among the women in my family. I know it's

important for me to be careful, but I've taken hormones, starting with

birth control pills in the late 60's, for so long that my bone density 2

months after starting Prednisone was 120% more than average for a woman in

her 20's - which I certainly am NOT. My dentist said that my teeth are

so strong, I don't even develop cavities and I've never had a broken bone

in my entire life. I realize that could change now, though.

Take care,

Geri

[Guest guest]

I apologize in advance for the lack of snipping, but couldn't really snip

much out of the first paragraph and have it make sense.....

On Thu, 29 Apr 1999, Geri and Bob Spang wrote:

>Today I started the same schedule you used, except maybe slightly

>different. I've set it up to alternate between 9 mgs. one day and 8 the

>next, but I just take it once a day, in the morning (such as it is -

>because of insomnia, I don't really wake up in the morning in the usual

>sense of things). I felt pretty good today. Far fewer muscle and joint

>pains, but tonight I'm aches and pains all over, mostly back, legs and

>hips. Since I don't do much in the evening except clean up after dinner

>and read or watch TV, I can live with those extra pains. I REALLY hope I

>can work this out. Starting next Wednesday, I'll try going 8/7/6/7/6/7/8

>and reduce weekly from there, or is that more quickly than you were told to

>do it?

I may have typo'd my original e-mail -- in major flare and NO ONE will

prescribe anything until they figure out the liver probs. If you're doing

9-8-9-8-9-8-9 this week, then next week you should do all 8's, then the

week after 8-7-8-7-8-7-8, then all 7's......... Nice easy baby steps.

>important for me to be careful, but I've taken hormones, starting with

>birth control pills in the late 60's, for so long that my bone density 2

>months after starting Prednisone was 120% more than average for a woman in

>her 20's - which I certainly am NOT. My dentist said that my teeth are

>so strong, I don't even develop cavities and I've never had a broken bone

>in my entire life. I realize that could change now, though.

WOW!!!! Great bone density!

L. tlcarter@...

ville (near Knoxville), Tennessee, USA

....who would kill for some prednisone to get me out of this hole I'm in

[Guest guest]

>From: Roselle50@...

>

>QUESTION TO ALL:

>

>Do you control how much and when you want to reduce your prednisone? Alot of

>notes I get the expression that you control the reducing and increasing of

>the medicine. I just was wondering.

>

>I do what the doctors tell me to and don't change the medicine unless they

>tell me to.

>

>Sue AIH

>WI

>

Sue

I was told not to change my daughter's medication at all unless

specifically instructed to do so by her doctor. She said that if we reduce

it too fast she may relapse and we would have to start all over again.

[Guest guest]

Tracey,

Thanks for the information about the reduction schedule. I'm already

having some serious back pain and I'm just about certain it's because of

the new schedule. In other words, until now, by taking half in the AM and

half in the PM, I hurt a little all the time but it was never too bad.

Now, the first half of yesterday I felt great and last night the aches and

pains were horrendous. Even worse this morning when I first woke up.

However, I'm totally confident that as soon as today's pred kicks in, I'll

be fine again. Also, I should mention that several months ago my

Rheumatologist (in San Diego, 360 miles away) prescribed Vicoden, once or

twice daily, for chronic pain. This was approved by my Hepatologist of

course, and both doctors say that if I stay at this dosage it won't cause

further liver damage. For me, Vicoden works like a magic potion and is

extremely effective.

Like many of us, I have a love-hate relationship with Prednisone. I know it

has horrible side effects and I'd really like to be slim again, not have to

worry about osteoporosis and glaucoma and diabetes, etc., etc., but I am so

grateful that it's there when I need it. Without it and Imuran, I don't

think I'd be alive today.

You can't take Prednisone at all right now?

Take care,

Geri

[Guest guest]

Sue, Could I ask you again where you live? I will be moving to Fond du

lac in July. Dianne

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[Guest guest]

Thanks Geri:

I just go the feeling when I read the postings that they were changing their

predisone by themself. My doctor here in Superior does not do anything with

the medicines except orders them for me when the Mayo Clinic orders the

changes and then if he had a problem he would call Dr Czaja himself. I'm his

only patient and also first patient with AIH so he has been reading alot on

it to keep up with the changes and the side effects etc.

Well, today is going fine for me so far. Took my daugher to work at the golf

course, had the oil changed in the car and order flowers for the party

tomorrow for my Mom for her 88th birthday open house we are having. She is

really excited. My father died in July l996 and she is alone at the house in

the country. She has were medical problems but so far we have been able to

keep her at home.

Have a nice weekend.

Sue AIH

WI

[Guest guest]

Dianne:

I live in Superior about l50 miles for Eau and right on the tip of

Lake Superior, In fact the lake is less than a mile from my home. The

slogan for Superior in the summer is " Colder By The Lake " .. The lake is like

a air conditioner and we have to go out of town about 10 miles and the

weather is 10-20 degrees warmer. But it is a nice little town with a good

school system and friendly people.

Sue AIH

WI