Tapering Prednisone and Adrenal Grands? What is the worst thing that can happen?

I have been on Prednisone several times before but am currently tapering dwon from 60 mg - I think I have been on Pred longer than i ever have in the past (about 4 months now) and am afraid of what I have been reading about what can happen if you taper too quickly.

What can happen if you taper too quickly?  And what is too quickly for the average person?  My GI doesn't seem to mind if I were to only knock it down 5 mg every few weeks and that is too long for me.  It is wrecking the rest of my body.  I have been going down 5 mg every 5 days/a week or so and just want to make sure other people have been on that same schedule.

So questions:

1) how quickly is too quickly to taper

2) what are the bad things that can happen if you do taper too fast

3) what happens with your Adrenal Glands when you taper the pred, how soon so they start up producing their own steroids again

4) can you counteract problems by recognizing the symptoms of whatever it is and bumping your dose back up

5) is there any kind of a natural approach to counteracting the symptoms of weaning off pred?

THANK YOU in advance for ALL responses!!!  

When my GI put me on prednisone at 40 mg/day knowing I was going to be on it for a long term, She leaned across her desk, looked me in the eye and said " Do not stop this drug. You will die!" Answer your question? I'm not going to tell you how to taper thats your dr.'s job but I understand the last 10 mg are the danger point. A few years ago when I was on it friend of mine who knew I was on it was complaining on the phone to me about his girl friend was really sick and very lethargic and couldn't even stand up. He told me 2 days earlier she'd decided she couldn't stand the side effects and decided to quit and throw her prednisone down the toilet. I told him to bring her to my house and gave her her normal dose and enough pills to get her to her Dr.s appointment after the weekend. Boy was she sick she was lying in the car and couldn't even sit up. He took her home and phoned me about 6 hours later and said she was feeling much better and was walking around but still felt tired. My suggestion DON"T mess around with this drug please! Rob

Thanks Randy! 

feeling weak?  sweating for no reason?  oh WAIT, that's being on prednisone now! :)

I understand the need to taper slowly, and I am, and I have in the past - I was just wondering what exactly happens to your body when you come off the steroids.  The horror stories of "you might die!" don't explain what that actually means and what is going on in your body. 

I am tapering about 5 mg every 5 days or so and if I start to have problems I'll probably just stay at the dose I am on for another 5 days or so and see how I feel then, but otherwise I am am having the same side effects I do while on the prednisone - heart racing, etc combined with lethargy, etc so I can't tell the difference with any new symptoms!

Thank you so much for responding, I appreciate your input!! 

There is a poster here, Julia Hill, who I believe has permanent adrenal suppression from being taken off of steriods too quickly in the hospital. She has to take a low dose of prednisone every day now. Be careful.

My doctor said you can basically die, that's how serious it can be. He gave me a really great taper schedule, since before that I started to feel sick with the tapering I was doing before. And yes, I started to feel bad during that last 10 mg taper. I had to go up a few times, and then go down that final time with his taper schedule. That worked great. I don't think it's something to fool around with, that's for sure! Your body just stops making that stuff while your on the pred, and it's necessary to have it! Tapering the right way for you allows your body to "wake up" and start making it again.

Oh and yes I've heard of people having to take pred FOREVER because of that condition, their body simply will never make it again.

A 5 mg taper doesn't sound like it's going too quickly to me... but yeah... Listen to everyone here.... Stopping prednisone can cause death... In case, you didn't quite understand what everyone else was saying... This is what happens...

Your body, on a natural basis... produces this hormone (cortisol, I believe)... Obviously, your body needs this hormone... it's needed for a variety of processes...

When you start taking prednisone, the prednisone provides you with extra doses of that hormone... So your body is like... "DUDE! Someone's doing the work for me! Awesome! I'm going to go watch football!"

So, now your body has stopped making that hormone because the prednisone is providing that hormone for it.... Steroid-dependent as someone mentioned...

When you taper down at a slow rate, your body gradually realizes... "Hey! What's going on here? Where'd that dude making that hormone go? Crap, now I gotta miss my soaps..." So it gets up off its lazy butt and starts slowly producing more of that hormone...

If you taper far too quickly... or if you just stop taking the prednisone suddenly... Your body doesn't have time to start producing that hormone.... So, what happens is... it goes into shock... "OH MY GOD! WHO TURNED OFF THE LIGHTS?!"

And when you go into shock, the systems in your body start shutting down... which, of course, isn't a good thing.... Because your whole body can shut down permanently... i.e. Death...

So... That's the story... Hope it was informative... //^_^\\

Prednisone is a very difficult medicine, I agree.... You will feel so much better once you finish tapering...

And I'm glad I made you laugh... Laughter is a great medicine, as well... :D... And I often find it comforting and amusing to attach personalities to various processes to my body... I dunno why... *lol*

I like to imagine sometimes being able to take my disease out of my body and start beating on it like a punching bag...

You just gotta find ways to make light of things, sometimes... :)

I have suffered with ulcerative proctitis for over eleven years. Since that time I have been on and off prednisone several times but usually able to taper off within a two month period. May of 08 I was hospitalized, had to stay on prednisone for seven months before full recovery only to flare again in May of 09. I now consider myself prednisone dependent and trying desperately to get off this &*%$ drug. Remicade failed after my 3rd infusion. I started Humira on Wednesday. Last Monday, the doctor had to increase the prednisone to 40 mgm (I was down to 10 mgm but bleeding like a stuffed hog). Still bleeding and crampy. Afraid to decrease the prednisone just yet.
I wanted to say that I had a close friend who suffered from Crohn's. She took herself off the prednisone, developed Addison's Disease and died from Sepsis five years ago at age 58. This is something we can ill afford to take lightly.

If Humira fails, I am headed for surgery. Tired of this suffering.

Yuppers...my body loves them steroids. Been on the stupid stuff for over 3 years...down to 1mg...just as Nanners said, feel downright HORRID for a couple of days and even weeks/months, depending on the dose and how I'm doing...

Just a thought, though you may feel tired cuz of them steroids, and if the D and bleeding are a bit in control, if you start and stay slow, you can work out, like forever, and the muscles don't hurt at all, even the next day!!! Helps get rid of that shakey feeling when on higher doses, at least for me...I did the elipitcal...slow, but I could go forever!!! (the happy side of prednisone)

Hi,

Please listen to what everyone is saying here, and really hear it because prednisone is not a drug to take lightly.  I have had crohn's for 30 years and have pretty much been on prednisone all that time minus maybe a year or two all together.  I had surgery in 1997 and my colorectal surgeon took away my IV steroids and didn't replace them orally.  I began to feel worse as the days went by until I finally came crashing down and couldn't even get up.  I was nauseous, had no appetite, was weak, lethargic, etc..  Luckily my surgeon came back on shift after 3 days off and saw me and knew immediately I needed steroids.  I spent another week in the hospital on IV steroids and have been on them orally ever since.  I seem to need 10 mg/day as whenever I have tried to wean down by 1mg/month I just can't function properly.  Of course I have had an ACTH test as well as the glucose test for testing the adrenal glands, and I failed both.  I too wear a medical alert saying steroid dependent as instructed by my endocrinologist. 

Even all these years later, I have never felt the same as I did before I came crashing down.

Take care,

Julia

 

Is there a test you can take to see how your adrenal glands are holding up? What is an ACTH test? Is this something routine your dr tests you for?

Might want to drop by 5mg every five days instead of 10mg - that's kinda fast. Unlikely to be harmful, but still, better safe than sorry. #cliche.

Are you having side-effects from them? I supremely doubt that dropping 10mg every 5 days would be harmful, given you have only been on steroids for just under a month and are not on a massively high dose, but I'm just being cautious. It's up to you whether you want to try it.