Newly diagnozed with PMR and trying to taper prednisone effectively to avoid a flare

[pszak72]

I am tapering from 15mg to 12.5 and having some difficulty. Is the morning stiffness just prednisone withdrawal or a flare?

[1Purplecrow]

Hello, welcome to PMR.

You did not say how long ago you were diagnosed, other than that you are newly diagnosed.

I hate to be the bringer of bad news, but it sounds like you are hurrying to taper off Prednisone. If that is the case, you have your horse way ahead of your cart. First you need to understand that prednisone does not cure your PMR. It simply helps manage the inflammation aspect of a long-term disorder, and allows you to lead a life within a tolerable range of pain and discomfort.

Pretty much everyone who is newly diagnosed with PMR, and who begins to use the miracle drug called Prednisone, wants to jump off the Prednisone train immediately. After some time, in my case, nearly 4 years, some of us come to realize that the race is not to end prednisone, but to come to the end of the INFLAMMATION which is managed by the prednisone. For some, the inflammation ends in a year or two. For others, it lasts much longer, for some, decades....

I am confident that those more knowledgeable than I, will soon log on, and give you specific answers to your question. In the meantime, begin reading back through the archives on this forum. You will find answers to the questions you have now, and to questions you have yet to ask.

Kind regards, and keep asking, Jerri

[PMRandRA in reply to 1Purplecrow]

Purplecrow has definitely hit the nail on the head and as such and for a change, I have nothing to add except I wish you all the

best for a good future.

🌺🌷

[pszak72 in reply to 1Purplecrow]

Thanks for the input. Been on prednisone since March. But no, I am not hurrying to get off prednisone. My Rheumy suggested the taper which I also believe is too fast.

[PMRpro Ambassador]

Impossible to say without more detail. And what Purplecrow says is absolutely correct.

Did the morning stiffness go when you started on 15mg? How long have you been on 15mg? How are you doing your reduction? What time do you take your pred?

The cause of the symptoms we call PMR is not affected in any way by the pred - it chugs along in the background and every morning causes the release of inflammatory substances at about 4.30am. Unless the new lot of inflammation is either prevented or until it is combated there will be morning stiffness. The sooner after 4.30am you take your pred the less inflammation it has to deal with - so the sooner it is gone. A higher dose inevitably works better/faster than a lower one.

I'd say trying to reduce 2.5mg at one go, going from every day the old dose to every day the new lower dose is too much - I know it is what many doctors say to do but it is very unlikely they have ever tried to do it together with PMR.

[pszak72 in reply to PMRpro]

Thanks for your input. I started on 20mg in March, went down to 15 in April. No problems at 15. Stayed on 15 until June, then down to 12.5. No real problems until 2 weeks ago I slept in to 6am. Woke up to what I think was a flareup. Got through the day with my usual dose of turmeric extract. Helps very much with the stiffness.

Started next day taking the prednisone at 4:00am. Also read about the 4:30 am inflammation dump. This seems to have helped morning stiffness which is gone by 12:00pm entirely. I believe the

Turmeric supplement is helping with stiffness very much. I take it at about 9:00am daily and before bedtime.

My last sed rate and crp tests were in normal ranges.

Thanks

PAUL

[DorsetLady PMRGCAuk volunteer]

Hi, and welcome,

Just to re-iterate what PurpleCrow has said, Pred does not cure PMR, it only controls the inflammation caused by the underlying illness, so as long as you have PMR you need the CORRECT level Pred to do that.

Initially a higher than required dose is given which gets the built up inflammation under control, and then you have to reduce in a timely manner to get to the right dose for YOU.

Lots of tapers do say 15mg to 12.5mg drop, but very often if 15mg was your starting dose that may be too much. Plus you must make sure that you have no return of symptoms at each level before you try and drop down. Recommended to stay at each dose for about a month to make sure it is working.

If you remember the advice -"do not drop more than 10% of your current dose" it will help. At 15mg that would be 1.5mg not 2.5mg. Not always easy to stick exactly to that depending on size of tablets you have, but worth remembering as a general rule of thumb. That's why you need to get 1mg tablets as well as 5mg or 2.5mg. Uncoated tablets can be cut, but not coated/enteric ones.

As for your pains, steroid withdrawal usually comes on the day after you reduce and may last for a few days, symptoms vary from aches to just feeling yuck!

If your stiffness came back after about a week or so of reducing then that's more likely to be a flare. However, some people still experience a little stiffness first thing, it takes a couple of hours for uncoated tablets to get into your system, enteric ones longer. So it may be that.

[Patience_1]

Hello and welcome. I can only add a bit about my own experience. I, too, started at 15mg, and was told to reduce to 12.5 after 2 weeks, then to 10mg after another 2. I got the "miracle" experience when I took my first dose (pains eased within the hour), and managed the drop to 12.5mg. When I tried the drop to 10mg my pains came back, and I decided to ignore the medics' wisdom and go with the shared experience of this forum - in other words, take it slow and steady. I'm convinced that, although it might feel like I'm creeping along like a tortoise, in the long run I will end up taking less steroid than if I keep relentlessly reducing and flaring and yo-yo-ing the medication.

It sounds like your reduction may be too fast for the level of inflammation you've got at present. I now do tapering at no more than 0.5mg each drop, and am now down to 11.5mg (from a starting point 9 months ago). The way I tell the difference between a flare and steroid withdrawal is that if it's withdrawal pain it usually comes on within the first couple of days of a drop, and eases off another day or so later. If it's a flare, I'm usually fine for 2-3 days after the drop, but then start to get pains that increase with each day. The reason I do 0.5mg drops is that I seem to be very sensitive to the medication (both in getting the benefits fast, and in feeling withdrawal). Going so slowly also helps me to pinpoint the level of pred I need.

Hope that's helpful. It's very much an individual journey, as we all seem to get such a variety of symptoms and reactions. Whatever the question, there's lots of helpful advice and support here. Good luck.

[SheffieldJane]

Hi and welcome to the site. All I would say is, make sure you've got the inflammation under control before you begin to taper. You are in the very early days of the disease, there aren't any shortcuts. You need to be feeling quite comfortable before you start tapering and you need to pace your activities too. I'd be concerned about the morning stiffness remember the forest fire image and the damage a few flickers of flame can eventually cause if they are not checked. Remember not to reduce by more than 10% of your dose. Let us know how you get on. Good Luck!

[pszak72]

Thanks for your i put.