Tapering

Hi Andrea,

You didn't say how quickly you decreased but it could be that the drop from 15mg to 12.5 mg was to much or to soon.  Remember the 10% rule and as your get lower it needs to be even less. 

Pain during reduction can be prednisone withdrawal.  Your body is adjusting to the lower dose and it takes a few days to do that. You may experience similar pain to PMR symptoms but they usually ease off after a few days.  If they get worse you should go back to the dose that managed the symptoms and stay there until you are stable again then decrease by 10% until you get to 10mg. At that point there are a few options on how you further decrease.  They are available on the Patient UK NE site and hopefully someone here will post the link.

Hope you get it sorted out soon.

Hugs, Diana🌸

If the pain started straightaway after the reduction - by the next day for example - then it is probably steroid withdrawal which can often manifest appearing similar to the illness for which you are taking the pred in the first place. It should improve over the next week or so as your body gets used to the new lower dose. If, on the other hand, it took a few days to appear and is getting worse then it is more likely it is too soon to drop to that level and there is still inflammation to be cleared out or the autoimmune disorder that causes the damage that leads to the symptoms we call PMR is still very active.

If you follow this link

https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316

in the replies part of the thread there is a description of a very slow reduction plan which minimises the effects of the stepdown in pred dose. Some people are very sensitive and while some people can cope with 2.5mg steps at the higher dose, as the dose reduces that becomes an increasing percentage of the dose. For many years it has been said for PMR that dose reductions shouldn't be by more than 10% of the current dose. That is 2mg at 20mg, 1.5mg at 15mg and 1mg at 10mg. So your 2.5mg was highish and that may be the cause of the problem.

If you are going to reduce "overnight" from the old to the new dose, it helps if you clear the decks, cancel plans for the week and lie low to give your body the best chance to cope. Or you use the "creeping" method I've described and fool the body into not realising what you intend to do: take away its fix of pred.

Someone on another forum has said today she has shown her GP the plan and he has approved it, saying he think it's brilliant and he will try it with some other patients. There are rheumies using something similar to it in the north of England and others intending using this one in a study. Everyone who has used them so far have found it works well to get them to their maintenance dose (if you will) and identifying that dose accurately. Dropping in big steps means you might miss the right dose and end up taking more than you need. 

And remember - you are never reducing relentlessly to zero: you are looking for the lowest dose that manages the symptoms as well as that first highest dose did or at least to very close to it. It might be 11mg now, it might be 6mg now - or even lower. That doesn't mean you won't get lower, just not yet. It isn't a race except in the sense of the tortoise and the hare and we all know who won that in the end!

yes since i started decreasing from 10mg to 9mg, my groins and thighs have given me some problems not pain more like aches, so i am keeping going and do as Eileen said, if it got bad just up to 10mg for a day to see what happens. good luck

My first doc did a 2-week test run at 20mg, which left me ill a few days after it ran out.

So it was off to the "rheumi" doc who startd me on 15mg prednisone at a 1mg/month taper.  I responded very well to this.

I was able to taper a bit faster than prescribed, initially, which was my choice.

(BTW I had already lost 15lbs, down to 137lbs, so doasge for me was more like a 190lb patient at 20mg initially).

Moving below 6mg I started seeing a return of at least a good portion of symptoms, but persevered until 3mg proved severely uncomfortable at around 13 months of treatment.

So I am back up at 4mg at the moment, with presumably some cortisol regulation now being supplied by my system.  Symptoms are medium I would say, still always migrating in their local intensity, possibly suggestive of an infection(?).

I am able to resume an athletic level of cycling, which I am hoping will somewhat help to improve matters, but my weight is still a tick under 140lbs most days and I'm 5'9" tall. Cycling happens to be a geat sport for skinny people btw.

I will add that among my varied symptoms, I had months of somewhat painful acne-type "dry" pimples mainly on my abdomen, but this cleared completely about 8mos ago. I once had shingles at 20-years-old (I'm 54 now) but this didn't so much remind me of that.

My appetite loss seems to result from a low-grade sort of nausea feeling that I experience fairly often, and which occurs together with an uncomfortable tiredness/sleepiness.

I did some particularly intense racing-style cycling yesterday evening (38 hilly miles, chasing racers), and I do feel much better than average today. I feel that I will soon be able to drop perhaps another half-milligram.

Hi Andrea, I just recently reduced from 12.5mg to 10mg and was feeling a bit achy, I am hanging on in because I don't want to go up, to have to come down again, but if I needed to, then I would definately increase.  See how it goes with your rheumy.  Good luck.  Pat