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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.