I’ve mentioned before that I’ve been on prednisone more than I’ve been off of it for the last few years. My latest stint with this drug started in early September, when a flare-up struck while on vacation, of course.  I began with 30 milligrams, which is about an average dose for me to start feeling better, but I suffered for weeks as I gradually moved up to 40 and then 60 milligrams. My doctor told me that if the 60 milligrams didn’t work, he would need to start IV steroids. Luckily, 60 did the trick.

Then came the tapering. I dropped to 40 milligrams quite successfully, but started to flare again anytime I went below that.  After weeks at that dose, I was able to move down to 30 milligrams, then to 20.  By my last doctor’s appointment, I was desperate to get off the stuff.

Prednisone is a miracle drug. Within three or four days of taking my average starting dose, I usually feel much better. But I hate the side effects. My heart pounds. I can’t sleep. I sweat. This time around, I’ve gained weight, too, which is frustrating since I’m not eating much.  I also have swelling and puffiness in my jawline and under my eyes.

I started lowering the prednisone about three weeks ago, and am happy to say that I’m down to 10 milligrams, soon to be 7.5.  I can’t wait to be done. But at the same time, I’m worried. It never ends well when I go off prednisone.  My symptoms usually come roaring back within a matter of weeks. Because I’ve started Stelara (ustekinumab), I’m hopeful, kind of, that I will get off the pred, and move on to many months without it. But I’m prepared for the inevitable — I will need to go back on it at some point.

I just hope it’s later rather than sooner.

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