Re: Getting off Prednisone

[Guest guest]

I would just like to remind our readers that getting off of prednisone is NOT an

option for many of us. We've all heard the horrors of taking prednisone, but

for some it is life or death. Knowing the long term effects, we can take

precautions to lessen the side effects. Please don't attempt to stop prednisone

unless you are under the care of a physician. People have died from going off

prednisone cold turkey. Those with respiratory problems shouldn't even

consider it. Many of us don't have a choice because nothing else works. If I

had to choose between prednisone and unrelenting pain, the prednisone would win

hands down. Quality of life is a very important issue.

a

----- Original Message -----

From: Jim & Delaine Lowry

keywest@...

Sent: Monday, March 19, 2001 2:33 AM

Subject: [ ] Getting off Prednisone

This came from another list and I thought it might be beneficial to those

that want to get off prednisone. For me, it was one of the hardest things

that I had to do but I stuck with it .

> Subject: Re: Getting off Prednisone

>

> >

> >First let's start with some basics: The adrenals effectively cease

> >production of natural corticosteroids at between 5-7 mg. The " exact "

> >figure is not known and would be variable anyway, but Dr.'s generally

> >agree 5-7 is the most likely place, although some say it starts as lows

> >as 3 and others as high as 8.

> >

> >After a long period of time with excessive corticosteroids in the body,

> >the adrenal cortex has not only ceased production but as with ALL body

> >parts that are not used, it begins to shrivel up and die. The shriveling

> >is gradual, the death of that section of the adrenals even more so. For

> >the time being there is no percentage in being overly concerned with

> >that other than understanding that it occurs.

> >

> >At 15 mg, your adrenal cortex is still sidelined, it is not even in the

> >game. So what you have at that point is generalized reactivity and

> >compensation due to the corticosteroids and perhaps salt/fluid

> >imbalances in addition to any extra inflammatory processes resulting

> >from the disease(s).

> >

> >Since you asked about checking the archives and searching, I am assuming

> >it was either (a) unproductive or ( overly difficult. Either way, the

> >information was unavailable. In light of that, here it is once

> >again,following my sig. line.

> >

> >Regards, -----------------------

> >Geoff ** Usual Disclaimers **

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

> >How can you have hope?

> >Get under the blood of the Passover Lamb.

> > EXO 12:7-3 / MAR 14:24 / REV 12:11

> >

> >http://www.healingyou.org/ Nonprofit: Herbs, Homeopathics & supp's.

> >http://www.800-800-cruise.com/index-aff.html Make money & travel!

> >http://www.800-800-cruise.com/ Over a MILLION travel deals!

> >

> >

> >

> >========== GETTING OFF OF PREDNISONE ========

> >

> >Hi Gang! Geoff Crenshaw here.

> >

> >Pred is an important, but very dangerous drug. The general consensus is

> >that once you hit 5-7mg your body stops producing its own cortisol all

> >together. The numbers are inexact as every person is different, some say

> >this starts at 3, others at 8, but the point remains. Put enough of an

> >artificial substitute in, and the body compensates by halting production

> >of the real thing.

> >

> >Try this routine... (- Maybe we should post this. I've written it

> >out several times over the last few years but sure enough I'm going to

> >forget something one of these days.) There are other routines which do

> >not stretch-pulse (see below) and which remain " at level " for longer

> >periods. You may need to " blend " the routines, depending on your own

> >situation. Pay attention to your own body and the " feedback " it gives

> >you.

> >

> >Here it goes:

> >

> >ASSUMPTIONS:

> > Starting Dose 10mg 1/x day (start at your point in the routine,

> > e.g., 7mg is STEP 4)

> >

> > Relatively " clean " diet (i.e., no caffeine, other stimulants, rec.

> > drugs)

> >

> > Relatively " clean " lifestyle (i.e., nonsmoking, no alcohol at this

> > time)

> >

> >NOTATIONS:

> > Dietary issues such as caffeine, soda, diet soda, excessive sugar,

> > etc., put a " load " on the body system. If present, all times

> > mentioned will probably need to be extended

> >

> > Lifestyle issues such as smoking and drinking do the same. There are

> > also drug-specific issues with alcohol, amphetamines, etc. Involve

> > a physician with frequent (at least 1/x wk) checkups if this is an

> > issue.

> >

> > Prednisone is available in 1mg tablets. You will need as low-dose

> > tablets as you can get to simplify the logistics of this routine.

> >

> > If at anytime during the routine you do not stabilize, go back ONE

> > Step and remain there until stable. This routine must be done

> > slowly. This is not a matter of will power nor personal achievement.

> > It is a function of weaning a glandular system from a man-made

> > substance that causes it to cease production of it's own product and

> > putting that complete glandular system back " on line. "

> >

> > At STEP 11 the clock will become an issue. Do not dose by " clock

> > edict. " If you are comfortable stretching further/faster than

> > listed, do. But do NOT do it if you are UNcomfortable. DIScomfort

> > is a very important sign. Pay attention to it, slow down the

> > stretches if needed, pause at a level for a time if needed, etc.

> >

> >PREPARATION:

> > Ensure you are STABLE. Stability is the key to making this routine

> >work and weaning off of Pred. If you are enjoying an unclean diet, use

> >this time to address that as well. Increase your intake of " pure " water,

> >i.e., filtered, reverse-osmosis generated, bottled, etc., until urine is

> >extremely light or near clear. Temporarily restrict (read: remove) beef

> >and red meats from diet and any food that leaves a sour or otherwise odd

> >taste or feeling in your mouth. Also, if you fatigue a half hour or so

> >after eating any food, restrict that as well. Common suspects include

> >yeast-risen breads, wheat, milk & dairy products, and sugars such as

> >candies. If you are suffering allergies, try to filter your air as well

> >(portable HEPA filters are helpful for this.)

> >

> > The concept here is to reduce the " overhead " on the body system.

> >Doing these things will enhance both the speed and extent of your

> >success. They may help; They may not be necessary; They are beneficial,

> >regardless.

> >

> >ROUTINE:

> > 1. Take your routine dose of Pred (Prednisone) daily for two weeks.

> >Make sure you are stable.

> >

> > >> TAKE YOUR PRED AT THE SAME TIME EVERY DAY UNTIL STEP 11

> > IF YOU CANNOT GET TO STEP 11 THIS WAY, READ 11-18 AND

> > START USING THE STRETCH METHOD TO WORK YOUR WAY DOWN <<

> >

> > 2. After two weeks, reduce your dose by 1mg. You are now at 9mg.

> > Stay there 7-10 days AFTER you stabilize, assuming that within 3

> >days after the drop you feel some discomfort and that remaining at the

> >new dose the discomfort settles down.

> >

> > 3. After 7-10 days of STABILITY, drop 1 mg. You are now at 8mg.

> > Stay there 7-10 days AFTER you stabilize, assuming that within 3

> >days after the drop you feel some discomfort and that remaining at the

> >new dose the discomfort settles down.

> >

> > 4. After 7-10 days of STABILITY, drop 1 mg. You are now at 7mg.

> > Stay there 7-10 days AFTER you stabilize, assuming that within 3

> >days after the drop you feel some discomfort and that remaining at the

> >new dose the discomfort settles down.

> >

> > 5. After 7-10 days of STABILITY, drop 1 mg. You are now at 6mg.

> > Stay there 7-10 days AFTER you stabilize, assuming that within 3

> >days after the drop you feel some discomfort and that remaining at the

> >new dose the discomfort settles down.

> >

> > 6. After 7-10 days of STABILITY, drop 1 mg. You are now at 5mg.

> > Stay there 7-10 days AFTER you stabilize, assuming that within 3

> >days after the drop you feel some discomfort and that remaining at the

> >new dose the discomfort settles down.

> >

> > NOTICE: CHANGE IN DROP QUANTITY!!

> >

> > 7. After 7-10 days of STABILITY, drop 1/2 mg. You are now at

> >4-1/2mg.

> > Stay there 7-10 days AFTER you stabilize, assuming that within 3

> >days after the drop you feel some discomfort and that remaining at the

> >new dose the discomfort settles down.

> >

> > 8. After 7-10 days of STABILITY, drop 1/2 mg. You are now at 4mg.

> > Stay there 7-10 days AFTER you stabilize, assuming that within 3

> >days after the drop you feel some discomfort and that remaining at the

> >new dose the discomfort settles down.

> >

> > 9. After 7-10 days of STABILITY, drop 1/2 mg. You are now at

> >3-1/2mg.

> > Stay there 7-10 days AFTER you stabilize, assuming that within 3

> >days after the drop you feel some discomfort and that remaining at the

> >new dose the discomfort settles down.

> >

> > 10. After 7-10 days of STABILITY, drop 1/2 mg. You are now at 3mg.

> > Stay there 7-10 days AFTER you stabilize, assuming that within 3

> >days after the drop you feel some discomfort and that remaining at the

> >new dose the discomfort settles down.

> >

> > NOTICE: CHANGE IN DROP QUANTITY!!

> >

> > 11. Things start to get dicey from here on out. At about 3mg, +/-,

> >your body has to start producing its own corticosteroids. This is where

> >you start " stretching " or " pulsing " .

> > Stay at 3mg until stable for 7-10 days. Now the routine

> >changes...

> > Start stretching the periods between doses. If you normally take

> >your Pred at 9:00 am, move it off to 10:00 am on day 1, then 12:00 noon

> >on day two, then 3:00 p.m. on day four, adding an additional hour to the

> >between-dose periods every day or couple of days.

> > Do NOT get in a hurry. DO write things down. It will be very

> >hard to keep track and see where you are and what is working if you

> >don't. Try also to keep a diary of your foods eaten. You may find a

> >correlation to a particular foodstuff with pain and if so, be able to

> >limit or eliminate that foodstuff from your diet for the time being.

> > By now your dosage intervals should be looking something like

> >this:

> > Hours: 24 / 25 / 26 / 27/ 28 / 29 / 30

> >

> > There are two concepts at work here:

> > 1. Stretch the intervals between doses out to such an extent

> >that you slip into the next quantity drop without a major change.

> >

> > Example - 3mg at 24 hr doses is roughly .1250mg/hr. Obviously

> >there are high/low blood levels along the way but this gives a rough

> >starting point. 2-1/2 mg is .1042/hr.

> >

> > 2. Pulsing the adrenal gland's workload so that it exercises /

> >sleeps / exercises / sleeps / exercises, etc. It has been " off-work " a

> >long time and will take a good deal of " exercise " to get back in shape.

> >Stretching out the length of time between doses has the effect of

> >dropping the dose while still " pulsing " the adrenal gland with.

> >

> > Example - Within minutes after the Pred hits the bloodstream,

> >the adrenal gland will slow or stop production of your own

> >cotricosteroids. As the Pred is processed out of the bloodstream, the

> >adrenal gland is forced to start coming " back on line. "

> >

> > STEP 12. You are at 3mg, you have stretched your doses out to 30

> >hrs. drop your dose 1/2 mg to 2-1/2 but go back to taking your Pred

> >every day at the same time, e.g., 9:00 am daily.

> >

> > After 7-10 days of STABILITY, start stretching the periods

> >between doses again, as in Step 11. If you normally take your Pred at

> >9:00 am, move it off to 10:00 am on day 1, then 12:00 noon on day two,

> >etc., until you are get to 30 hrs.

> >

> > STEP 13. Drop to 2mg. STAY there until you are stable for 7-10 days.

> >Then start stretching the dosing periods out again until you hot 32 hrs

> >this time. As you see, you are very, very slowly working your way both

> >DOWN and OUT on your dosing. 32 hrs matches the next drop.

> >

> > STEP 14. Once you hit 32 hrs between doses, drop to 1-1/2mg but go

> >back to taking your dose at the same time every day, i.e., 9:00 am (or

> >whatever time it is you prefer)

> >

> > STAY there until you are stable for 7-10 days. Then start

> >stretching the dosing periods out again until you hit 36 hrs this time.

> >As you see, you are very, very slowly working your way both DOWN and OUT

> >on your dosing. 36 hrs matches the next drop.

> >

> > STEP 15. Once you hit 36 hrs between doses, drop to 1mg. At 1mg your

> >adrenal cortex is definitely working. Here it is working / resting /

> >working / resting, where before it was asleep -- working / sleeping /

> >working / sleeping. There has been a change but you must be very

> >careful. STAY here until you are stable for 7-14 days. Notice the

> >stability length has changed. If you are Up and Down, you are not

> >stable. Stability is the key to finding the opportunity to exercise the

> >adrenals more.

> >

> > Start stretching your dosing periods out again until you hit

> >32 hrs this time. As you see, you are very, very slowly working your way

> >both DOWN and OUT on your dosing. 32 hrs matches the next drop.

> >

> > STEP 16. Once you hit 32 hrs between doses, drop to 3/4mg but go

> >back to taking your dose at the same time every day, i.e., 9:00 am, or

> >whatever. STAY here until you are stable for 7-14 days.

> >

> > CRITICAL NOTE:Henceforth, changes will be in 1/4mg increments. You

> >will need no larger than 1mg tablets of Prednisone and a pill cutter

> >(Long's, Payless, WalMart, etc.) will be a great benefit.

> >

> > After you are stable 7-14 days, start stretching your dosing

> >periods out again until you hit 36 hrs this time. As you see, you are

> >very, very slowly working your way both DOWN and OUT on your dosing. 36

> >hrs matches the next drop.

> >

> > STEP 17. Once you hit 36 hrs between doses, drop to 1/2mg but go

> >back to taking your dose at the same time every day, i.e., 9:00 am, or

> >whatever. STAY here until you are stable for 7-14 days.

> >

> > After you are stable 7-14 days, start stretching your dosing

> >periods out again until you hit 48 hrs this time. As you see, you are

> >very, very slowly working your way both DOWN and OUT on your dosing. 48

> >hrs matches the next drop.

> >

> > STEP 18. Once you hit 48 hrs between doses, drop to 1/4mg but go

> >back to taking your dose at the same time every day, i.e., 9:00 am, or

> >whatever. STAY here until you are stable for 7-14 days. After that,

> >start the stretching routine again. There won't be any other drops.

> >Continue stretches until you need some pain relief. Do not dose by

> > " clock edict. " Your next step is Pred-free.

> >

>

[Guest guest]

I gotta second that. I have been trying for 2 years to lower my prednisone.

I can't seem to get past 10 MG. I was at 15 MG and dropped 5 MG, BOOM, like

that 2 years ago. I SHOULDN'T have done that. I should have gone much

slower! I did OK, but others may not. On January 10 of this year, I decided

it was time to try lowering AGAIN. It failed, BIG TIME. I only lowered it by

1 MG and I have been in a horrible flare since. I talked to my doc and he

told me to go back to 10 MG, which I had already done, and then some on

extremely horrible days! Next time, once I am stable, I will go 10 MG, then

9 1/2 MG EOD. Even slower!

Like what a said: " If I had to choose between prednisone and unrelenting

pain, the prednisone would win hands down. Quality of life is a very

important issue. "

Prednisone always wins with me! The pain is horrific! And what quality I do

have in my life, I want to keep. =) I take calcium and Didronel and do what

I can to protect my bones. Not to mention, for me, the Prednisone is what

has kept me out of a wheelchair all these years. If I hadn't of been on it,

for almost 19 years at varying levels, I really believe the damage would be

MUCH worse and I'd be having wheelchair races with some of my neighbors! =)

~Rainy Sue

----- Original Message -----

> I would just like to remind our readers that getting off of prednisone is

NOT an option for many of us. We've all heard the horrors of taking

prednisone, but for some it is life or death. Knowing the long term

effects, we can take precautions to lessen the side effects. Please don't

attempt to stop prednisone unless you are under the care of a physician.

People have died from going off prednisone cold turkey. Those with

respiratory problems shouldn't even consider it. Many of us don't have a

choice because nothing else works. If I had to choose between prednisone

and unrelenting pain, the prednisone would win hands down. Quality of life

is a very important issue.

> a