Prednisone tapering for polymyalgia rheumatica
PMR tapers are long, frequently interrupted, and hard to hold in your head. That is the problem GentleTaper was built for.
What a taper usually looks like
A taper is set by the clinician who prescribed the steroid, and no two are quite the same. Most share a shape, though.
They begin at the dose that brings things under control, held long enough to be sure it has. After that the reductions come in steps, with a stretch of days or weeks at each new dose before the next one. The steps are usually larger near the top and smaller further down. Early on, a reduction is a modest fraction of what you are taking. Nearer the bottom, the same cut in milligrams is a much larger share of the dose that is left — and it is also the range in which the body has to start producing its own cortisol again, after months of not needing to.
That is why the last stretch is often the slowest, and why it can involve half tablets, alternating doses, or longer holds between one step and the next. It is also why a taper does not always run in one direction. If symptoms return, a doctor may hold you at a dose for a while, or step back up before carrying on down.
Why PMR tapers are different
A short course of steroids is over before you need to keep track of it. A PMR taper is not like that. Mine ran from January to the end of November — just under a year. And that only counts the taper. I was ill for a long time before anyone put a name to it.
I never saw a rheumatologist. My GP wouldn't refer me — he said that if the steroids didn't work, he would. They worked. So I had a prescription and an instruction to taper off. In theory I could have gone back and asked him at every step. In practice, getting an appointment is hard enough that you don't. You work it out yourself.
I worked out my taper from the internet. I cut my pills into pieces with a cutter the pharmacist gave me, because the doses I needed to step down through don't come in a bottle.
That's the situation this was built in. Not a carefully supervised taper with a specialist checking the plan — one person, a prescription, and a real need to keep an accurate record, because nobody else was keeping one.
None of which is an argument for going it alone. If you have a rheumatologist, keep them. This is simply an acknowledgement that plenty of people don't have one, whether they chose that or not.
Why tracking matters more at the bottom
At the start of a taper there is plenty to remember it by. The doses are large, the reductions come close together, and appointments are frequent enough that someone is asking you the question every few weeks.
The low-dose end is quieter, and that is what makes it hard. The steps get smaller, the holds get longer, and months can pass in which almost nothing about the routine changes. When you try to reconstruct it later — when did I last come down, how long have I been here, did I take it on the days I was away — memory has very little to hold on to. Half tablets and alternating days make it worse, because now there is arithmetic involved.
It is also the stretch where symptoms are hardest to read. Feeling worse at a low dose can mean the condition is stirring again, or it can mean the body is adjusting to making its own cortisol after a long time without having to. Telling those apart is not your job. But the person whose job it is will ask what you took and when, and turning up with an answer rather than an estimate changes that conversation.
That is the part I kept getting wrong on paper, and it is the reason this exists.
Common questions
Does this work for prednisolone?
Yes. North America is usually prescribed prednisone, which converts to prednisolone in the liver; Europe and Scandinavia are usually prescribed prednisolone directly. Whether the label says Prednisolone, Prednisolon, Winpred or Deltasone, it is the same type of corticosteroid medication, and the tapering principles described here apply to all of them.
How long did your taper take?
Just under a year — January to the end of November. That's one person's taper, not a guideline. PMR tapers vary a great deal, and how long yours runs is a conversation for your doctor.
Can I use GentleTaper for conditions other than PMR?
Yes. It was built during a PMR taper, but it works for any corticosteroid taper you are following.
Will it remind me to take my dose?
Yes, notifications are available.