How do you define a 'flare' ?
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I am currently on 11mg Prednisolone which I've been taking for just over 2 weeks. Started at 20mg approximately 10 weeks ago reducing to 15mg then 12mg and now 11mg. Apart from a little pain and stiffness in my upper arms first thing in the morning I've been pretty much ok and even the extreme weakness and fatigue I felt at the beginning had diminshed to a great extent. However, yesterdayI noticed increased stiffness in my arms and shoulders first thing as well as in the back of my thighs, this did get better later on but I felt extreme fatigue and weakness all day, so much so that it was a real effort to anything although I did try and carry on as normal. This morning the pain and stiffness was worse, although nothing like as bad as it was when PMR was first diagnosed,however, I have felt a lot less fatigued. Does what I have described constitue a 'flare' and if so, what could have caused it? It is possible that I have been overdoing things a bit recently because I've felt so much better. Any advice welcome.
0 likes, 9 replies
Elijo fran2498
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Take care and hope you feel better. Elinor
fran2498 Elijo
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Sheilamac_Fife fran2498
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fran2498 Sheilamac_Fife
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EileenH fran2498
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It is thought by some people that the activity of the underlying autoimmune cause of PMR symptoms changes over time, it may wax and wane. While it is less active you may be able to reduce the dose of pred but then it becomes more active and the dose you are at is no longer enough so symptoms reappear.
You say you may have been overdoing it - that is a common cause of a flare in symptoms, especially if they then improve when you rest a bit more. You have to do your part - pacing yourself and resting as needed are both essential parts of managing the effects of PMR. You may get to a lower dose of pred if you avoid all the things that trigger problems - but is that what you want or need? If you HAVE to do things then you may need a bit more pred. It also doesn't mean this is the lowest dose you will get to - just where you can manage for now. In a few months you may be able to get much lower.
Your reduction is also pretty fast - using smaller steps and going slow often allows patients to get far lower than rushing at it like a bull in a chinca shop. There is a slow approach described in the replies section of this thread:
https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316
which is being used in a clinical study in the north of England. Many patients have done very well with it or a similar approach. Some people CAN reduce fast - because they need a pretty low dose to manage the symptoms. Others are far more sensitive to changes in the dose or have more active disease - we are all different and one size does not fit all in terms of reduction. Rheumies often forget that.
At the dose you are at the adrenal glands aren't involved - it is not until about 8mg pred that they have to wake up and do their job.
fran2498 EileenH
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EileenH fran2498
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julian. fran2498
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more recently, at 3mg/day, i think in terms of a slow, almost imperceptible, increase in symptoms until they reach a level at which a small increase is necessary for one or two days to get back to equilibrium (between pred and symptoms). As if the 3mg/day is just enough but not quite. Two days of 4mg/day was enough a couple of weeks ago.
I was interested in the burst approach mentioned in a different thread but haven't yet felt the need to experiment. It occurred to me that it may reduce the level of inflammation well below the level at which i notice it and it takes some time to return.
fran2498 julian.
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