The Taper Trap: Navigating the Steroid Rollercoaster

Prednisone is my RA’s life-long friend. I have taken a low dose every day since my diagnosis in 2010. Because of this, I usually have free rein to bounce between my lowest possible dose and about 11 or 12mg without my doctor’s approval.

I change my dose based on my daily symptoms. I try to keep it low so that I don’t experience the side effects, since I am pretty sensitive to the medication.

While this self-managed cycle offers me some control, I recognize that frequently adjusting my dosage, often called "steroid cycling," can lead to a cycle of instability. Bouncing between doses keeps my body in a constant state of flux rather than allowing it to settle into a steady, managed baseline.

Occasionally, I have increased (with my doctor’s permission) all the way to 15mg when I have a spell of full-time work or very active disease symptoms. But that has been my limit (thankfully!).

Transitioning to a new RA medication

In January 2021, I started Rinvoq and stopped the Orencia. As February wore on, the Orencia flushed out of my system while I waited for the Rinvoq to build up. It didn’t.

A sudden flare in my symptoms

I began to lose dexterity in my fingers. I even got stuck on the floor at the pharmacy because I could not stand up! It wasn’t a gradual decline, either. All of a sudden, my disease popped through the door, with luggage, and moved in.

My rheumatologist was not amused. He restarted me on the Orencia and stopped the Rinvoq immediately. In addition, he prescribed a quick burst of prednisone to kick this guy outta there. I took 30mg for one day, 25 the next, then 20 the following day.

He then kept me on 20mg until I sat down for my first infusion (which was about 7 days or so). I ended up staying on the 20 for a few days after that; I think, 10 days in total.

As someone who has never been above 15mg, I was a little shocked. My rheumatologist knew I was sensitive to the medication and he would never recommend such a high dose (for me, at least) unless it was 150 percent necessary.

Things must have been B-A-D. I felt really lousy, so I wholeheartedly agreed with the prescription change and downed the extra pills.

Evaluating high-dose side effects

I experience side effects pretty readily with prednisone, so I anticipated the gamut of them but on...well, steroids. I was mildly surprised that I did not experience side effects like I was expecting.

No mood change

First, my mood did not change. Usually, when I up the prednisone, I am way more impatient. It didn’t happen this time! In fact, I felt the same through the full two weeks (10 days + a few for tapering down). I did not feel hyper or anxious. I felt normal.

Absence of insomnia

Speaking about hyper, I usually get wicked insomnia when on higher doses of corticosteroids. None of that. I think I felt so terrible and was already so fatigued that not even a medication could counteract it. I slept soundly.

Hunger and physical changes

There was one side effect I expected but it didn’t kick in immediately. I was RAVENOUS. I ate all the things and experienced the moon face.

If you are unfamiliar, ‘moon face’ is the term used when you experience bloating in your face from steroid use. My cheeks were so full. I looked like a wee baby again!

Managing ocular side effects

There was one side effect that was especially notable, though. I had a mad eye twitch. My eyes were not more dry than usual or anything. It was just a persistent eye twitch that lasted the first three days of the bump (recall: 30mg-25mg-20mg the first three days).

This was probably the most annoying side effect because it was a constant, perpetual eye twitch for three days straight. I knew that steroids could affect the eyes.

My ophthalmologist recommended getting checked every time I was on a prolonged dose just to make sure the pressure was okay. I did and it was. Great!

Returning to baseline

Thankfully, when I lowered the dose, the twitch went away; actually, all of the side effects did. The moon face dissipated quickly since I spend a fair amount of time walking the dogs.

All in all, the prednisone burst was not as bad as I expected. I tried to lower my dose as much as possible. I am currently hovering at 11/12mg, which is to be expected. I am still on my loading doses of Orencia and won’t feel absolutely fantastic for another few weeks.

Looking back, while the burst was the lifeline I needed to get back on my feet, it was a wake-up call about how unpredictable the steroid bounce can be. Hovering at 11mg is a fine temporary bridge, but my ultimate goal is to move toward a more stable, long-term plan where I’m not constantly adjusting my dose. I’m ready for a chapter where my treatment does the heavy lifting, so I don't have to.

Have you ever had to bump up the prednisone suddenly? How was your experience? Let me know in the comments!