Re: Tapering off of Prednisone

[Guest guest]

I was upwards of 25 mg a little more than two and half years ago when I started

my taper, which just finished a month ago.  In short it took me 2 1/2 years to

go from 25mg to nothing.  But I would caution about using my example, as I don't

think mine was necessarily normal, nor is there a " normal " to be found.  Oh

sure, there may be a table in a medical textbook somewhere, but the fact is were

all very different people with different needs.

When I started my taper I was a 46 year old overweight male with a bad hip and

back with a history of depression.  I was taking a certain range of

medications.  Each of those issues -- age, gender, other conditions, and the

specific medications likely figured into my doctors decision on how to gauge the

taper.  And I think she made decisions on how to proceed at every appointment. 

Had my medications changed?  How was my weight, my mood, and of course how was

my arthritic condition?  I know for a fact she would have taken me completely

off the predisone three months earlier if not for the hip replacement (which was

relatively recent).

So I wouldn't look for a set-in-stone equation for tapering off steroids.  There

are too many variables that come into play for one to establish a " normal " time.

RA

North Jersey

Have any of you ever been on a high dose of steroids and had to taper

off of them? . . . What's normal?

Karol

[Guest guest]

Hi Karol,

Please go off of these as slowly as possible.

A dr had me going off of them tooooo fast and I had dizzy spells, my

legs would go out from under me.

I couldn't stand to cook, take a shower, shop, etc. Be very careful

because when I went too fast I had to start all over again to a pace

I could live with.

Good luck to you -- and I know I didn't get it a first either.

SD

[Guest guest]

The slower the better, too fast and you can have all kinds of problems. It took

me a year to get off prednisolone when my kidney transplant failed and I was

only 7.5mg daily.

Celeste

[Guest guest]

Thanks, I just want off of them!  I feel like I'm kind of whacked in the head

right now.  I go from feeling pretty good (in my head) to feeling downright

depressed.  The doctor has me on Lexapro, but these steroids are bad news.  I

wish I would have never been on them.  I'm sweating excessively, I've gained 26

pounds, my face looks like a balloon.  I'm embarrassed of the way I look.  It's

so depressing.  I've done a lot of looking around the web and it looks like its

very dangerous to go fast off these.  Looks like I'm going to be stuck this way

for a while!  Oh joy.

Karol

[Guest guest]

I have had to taper off of Predisone more then once. The first time was very

hard. However 2 1/2 years seems way too long a period. Here are some keys that

I have found to help. 1) excersie daily, by far the most important 2) get at

least 8 hours of sleep per night with at least one nap per day 3) offset the

mood swings with diazepam, 4) one should be able to reduce the dosage by 1 mg

per week at Least. But when on high doses come 5 per week until one reaches 10

mg. Then go to one per week. This is the toughest period.

I have a what is consider one of the worst cases ever recorded of PA and I am

still alive and well thanks to remicade. However due to uv/iritis I still need

to take predisone from time to time and at much higher doses the 25 mg. Say 60

to 80 mg! If I can do it anyone can. Good luck.

[Guest guest]

" billsbabe1 " <billsbabe1@...> wrote:

<<Have any of you ever been on a high dose of steroids and had to taper off of

them? What's normal?>>

I was prednisone-dependent a few years back when my asthma was out of

control, taking 60 mg daily for a period of several months. A new

allergist revamped my medication regimen, and I was eventually able to

get off the steroids, but it WAS a slow process. I tapered off by 5 mg

each week, but was told to observe carefully for any signs of rebound

(worsening of symptoms as the steroids were weaned off), Luckily, that

didn't happen, but if it had, he would have tapered me off even more

slowly. Depends on how well you can tolerate the taper, and how long

you've been on the steroid, I guess. A big thing they worry about when

you're on large doses of steroids for long periods of time is adrenal

insufficiency; if taking the steroids has caused you to develop

secondary adrenal insufficiency, then weaning off too quickly can cause

adrenal crisis (which is basically like going into shock).

" dreimutter1957 " <dreimutter1957@...>

[Guest guest]

I have attempted to taper off multiple times. I was taking 20 mg/day.

Previously, I would taper by 2.5 mg at a time and after a few weeks,

I would experience a terrible flare up and would have to boost back

up. After at least 4 failed attempts to wean off, and never making it

below 10 mg without a flare up, my rheumy wrote for 1 mg tablets. I

then weaned down 1 mg at a time with 2 weeks at each level, sometimes

more time, say if it was the holidays, or I was going to visit family

for the weekend - anything that could conceivably cause additional

stress to my body. Sometimes I could tell I had dropped down another

milligram for a couple days, but I didn't actually have a flare, was

just more tired than usual or ached more. It has taken me several

months, but I just stepped down to a 1 mg dose two days ago. I'm

really happy about that because previously I had never been able to

get below 10 mg. I generally feel pretty good, and I know I'd

probably feel fantastic if I was on 10-20 mg again, but the benefits

of being off the prednisone after long term use are great.

Good luck! I thought it would never be possible to come down this

far, and I know it's possible to get off it completely now.

in NC

[Guest guest]

Karol:   You have a doctor now that you can trust and a plan of action that will

hopefully make things so much better for you over the next few months.  I know

it's really hard when you're feeling so awful but try and focus on the future. 

You may not believe it now but you will feel so much better when you get on the

proper medications!  You likely won't forget all the pain and suffering but that

will just make you all the more grateful when it's gone . . . . . . .

 Joanna Hoelscher

[Guest guest]

Thank you for your words of encouragement Joanna. I need to get myself

together and have set a start date of midnight tonight to stop dwelling

on what's wrong with me and start focusing on getting better and doing

what's right. Ok, I allowed myself some self pity, but the pity party

is about to be over with. I'm so glad that I found this group,

everyone is so kind and understanding, I'm not sure what I'd do without

you all now!

Karol

[Guest guest]

, How long were you taking the prednisone? Are you on any meds now, or

off everything?

I've been on prednisone for about a year now. Rheumatologist is still trying to

figure out if I have polymyalgia rheumatica and/or psoriatic arthritis. Mostly

I've been on around 10 mg., was up to 20 for a month or so because I was going

on vacation. Felt GREAT then.

I seem to be sensitive to lowering levels, even dropping a couple of mg. Seems I

can never get below 10 mg. without a flare-up of pain. I'm due for blood work

tomorrow. If CRP levels are in normal range, my doc says we can try lowering my

prednisone again. I'm trying to hold off taking methotrexate, Humira; also

hoping maybe I have polymyalgia which I am told usually goes into remission in 1

1/2 to 2 yrs. Should I be worried for being on prednisone for so long? So far,

no deterioration of bone has been indicated by MRIs, etc.

Also, I'm just coming off a few good weeks, pain-wise, and out of the blue, a

lot of my pain has returned. No med changes, etc. Then I try to figure out if I

did something to cause the flare up -- too much exercise, not enough, eating the

wrong foods,stress, etc. This

is a very frustrating disease, but after reading a lot of email here, I do feel

very fortunate. I am 63 and was perfectly healthy before this. However, I'm

lucky enough to be retired, so can take it easy on my " bad days " , which I know a

lot of people have jobs, kids, etc.

and can't take it easy when they need to.

One last question, did the prednisone affect your ability to sleep?

I have insomnia terrible lately, even when the pain was at it's lowest.

Thanks to everyone for all your input, I've been reading for a while and it's

been very helpful. I wish you all better, pain-free days.