• My Stuff
  • Find Others
  • Groups
  • Invite
  • RA Connect
  • Community
  • Photos
  • Events
  • LMT
  • Forums
Quick Links
My Badges
Bronze Member
4045 Points

What are Points?
My Friends
Visit chris 2's profile
Visit DianeLouise's profile
Visit oranetta parker's profile
Visit Txnana's profile
Visit Gramma Ellie's profile
Visit maureen41's profile
Visit Bob_S's profile
Visit Wendy's profile
Visit Pinkie's profile
Visit Donna76's profile
Visit CallMeSteph's profile
Visit Annaart's profile


My Groups
visit  profile



Upcoming Events
Sorry, no events were found
(SusanOnWhidbey)
Member since '08
SusanOnWhidbey
Profile Update
Subscribe to this blog SusanOnWhidbey's Blog Add New Entry
There are some things I find myself writing over and over - and I usually leave out something vital. So I'll try this place.
The Prednisone Battle
Posted by: SusanOnWhidbey on October 18, 2008 at 9:29AM EST

So you want to get off the stuff we hate to love. Here are some thoughts about how to do it. But right off the top, I want to say that there are many monster fighters who just cannot function without prednisone on a daily basis. What follows is absolutely not directed at them!

 

In fact your adrenal glands look like mushroom caps, each one sitting on top of your kidneys. Normally they put out the equivalent of about 5 mg of prednisone each day to help take care of the ordinary body.

 

But so much for reality! It’s easier to think of the adrenals as big lazy bears living in a cave. With so little to do, they tend to be prone to lots of yawning. And one day the Monster slithers into the cave and says “Hey boys, you really look pooped! Why don’t you just have a nap and I’ll take care of everything.” Well, the bears really don’t need any more encouragement. And very soon they’re in a deep sleep.

 

Meanwhile, of course, all Hell starts breaking loose beyond the cave, the details of which you’re already too well acquainted. The bears are sinking into hibernation mode. And the monster is gleefully lighting fires in your hands, feet and joints, and luring every nerve in your body to dance a jarring jig.

 

Finally the rheumy puts you on prednisone! Monster keeps doing his ugly thing, but now it’s Super P to the rescue. First Super P builds a filter between your brain and your body that blocks the inflammation  pain. Sometimes Super P is a bit sloppy, so you may have trouble getting to sleep or have an out-of-bounds appetite, and usually Super P causes fluid retention so your face can take on a moonlike appearance. But notice, the Monster is still doing his number on your joints. Super P makes you feel better, but he does absolutely nothing about the relentless monster damage. And meanwhile, of course, he can create some long term problems of his own.

 

So there you are – and if you’ve been on the stuff for weeks, you’re probably hooked, because the bears are now almost comatose. The goal is to SLOWLY wake up the bears when the methotrexate is kicking in. The good news is that the MTX does do battle with the Monster. The bad is that it takes a long time to get up to strength. Some people can cut back on the prednisone fairly quickly, but for most of us it’s a long, slow process of trial and error.

 

So arm yourself with a pill splitter and a bottle of 1 mg prednisone tablets. After you’ve started feeling better with several weeks of MTX under your belt, try cutting back on the prednisone by no more than 2.5 mg. Stay at that level for 3 days and pay attention to how you’re feeling. If you’re trending slightly better, then stick with the reduced dose until you’re feeling as good as you were on the full amount. What you’ve accomplished is to turn on the lights in the bear cave. But if you’re trending downhill, then your body isn’t ready yet. So go back up to the full amount, and try it again in a couple of weeks.

 

Assuming all is well, try turning on some gentle music in the cave by cutting back another 2.5 mg. Three days of paying close attention. If the trend is good, stick with it; if not, go back up to the “lights on” level.

 

Then repeat, this time with gentle pats on the slumbering bears.

 

You get the picture. The goal is to wake them up slowly and gently. And meanwhile the MTX is really beginning to take hold.

 

Finally you’re down to the last daily 5 mg of prednisone. And here’s where you really need to crawl the rest of the way, because those bears now have to get dressed and start doing their job. Get out your 1 mg prednisone stash. Try going down to 4 mg, . . . three days . . . but if you’re losing ground, try splitting a tablet and go back up to 4.5. And then come down by .5 mg until you’re free. Wahoo!

 

Keep the prednisone on hand for flares. Your rheumy will have his/her own recipe for how to manage the doses. But since you’re no longer hooked on the stuff, you’ll be able to follow the recipe and get back off before the bears, who really aren’t very smart, realize they can hit the sack again. Fortunately it’s not like alcohol where even a half milligram would put you back to square one.

 

I need to warn you that any self-respecting MD, and certainly your rheumy, will shudder at the humongous poetic license I’ve taken with all of this. But if it helps you visualize what’s going on in your body, then my goal is met. Please post your war stories so we can encourage each other in this all important battle.

 

| Send This | Categories:
(5) Comments
Posted by: Kimberly on October 18, 2008 2:23PM EST
Wow, very good redention of what goes on with Super P. I love the way you explained it. I am way past Super P and am on MTX and Rituxan, but have a friend that is in the battle with prednisone and MTX right now. I forwarded this to her.

Thanks,
RA Mom

P.S. check out my blog at www.ConfessionsofanRAMom.com and my Group on Arthritis.org called RA-Coping Spiritually

Posted by: Flo Favire on October 20, 2008 10:29AM EST
Prednisone is my happy happy pill that make me FEEL GOOD. then I have to fight the weight gain, insomnia, and compulsive eating. Then once you start to FEEL GOOD, YOU NOW HAVE TO GET BACK TO NORMAL
It's a long road and then the flare up starts and I'm I ready for my P Fix, after years of on again, off again of the P Fix, I have learned to use meditation, prayers, and exercise, to calm me down with my daily living stress.. I have gotten better and the flare ups are less and less. God Bless you all. Flo Favire

Posted by: chris 2 on January 11, 2009 3:31AM EST
Susan, you have a wonderful gift there! Please don't ever change. It was because of you that I finally got off the P and I'll be forever grateful to you for that.
Keep up the good work!
Chris

Posted by: Bekah M on May 14, 2009 7:00AM EST
Awesome Blogs Susan! That was the best thing I've read in a long time. I tell you what, I am also a sketch artist, I should do some graphics for you and we can do a book on SUPER P...LOL...Great writing skillz!

Posted by: Jason Davis on April 26, 2012 2:04PM EST
I love Super P so much. I wish ours was not such a tumultuous affair :( I enjoyed this article :)

Loading...