I think I must be missing some vital piece of info here.
So ... our body’s immune system goes into overdrive for some reason and inflammation occurs. We take a steroid to reduce that inflammation. But the PMR is rumbling in the background and every night new inflammation occurs.
Is the initial dose of steroid to ‘mop up’ the accumulated inflammation thereby enabling us to taper down once it is stable/under control?
However, if the ‘disease’ is still continuing at the same rate, surely the amount of inflammation will still be at the same level?
How does reducing the steroid keep that under control? Surely at some point it’s bound to go wrong?
Sorry, feeling a bit thick at present!
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Liskeard
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PMR Pro will no doubt be along in a while to explain it more clearly.
As I understand it the best analogy is a bucket. The inflammation goes into the bucket and ultimately overflows - causing the PMR symptoms. The trick is to restrict the inflow to make sure the bucket never overflows. When you are first diagnosed, the inflammation is probably a bit more active, and because you've been untreated the bucket is full and overflows quickly. The higher initial dose mops up the excess and controls the symptoms. From then on it's a matter of finding the pred dose that stops the overflow. Ultimately (we hope) the inflammation goes away which may (or may not) get us to zero pred. In the meantime how quickly or slowly we taper is driven by the level of inflammation and the dose needed to keep it under control.
You are looking for the optimum-minimum dose to keep on top of the inflammation therefore the pain and stiffness.It is , as you say, just a sophisticated ,painkiller. The inflammation is harmful, uncontrolled.
In the mean-time we are avoiding stress ( ha) and pacing our activities, resting and sleeping a lot, aiming for a healthy diet, protecting bones with calcium and vit D and Vit K2. After a year or two according to my Rheumie we ought to be off steroids if we are a straight forward case. She is a leading light in the field. I am currently 3 years from diagnosis and being offered Methotrexate ( there are other drugs too) as a steroid sparer because of the undesirability of long-term steroid use. This drug, if tolerated, I am told, maximises the efficacy of the steroid action and allows patients to dispense with Prednisalone sooner..I hope this makes sense in layman’s terms.
There is a myth amongst the medical set that PMR only lasts a couple of years. In fact it's more likely to be about six years, but most of that may be at a very low dose with few side effects. Tapering to the lowest effective dose has to be done very very slowly in order to avoid rebound inflammation or steroid withdrawal pain.
I'm not a medic, but here's how I understand PMR. This is a little long, but I'm trying to build the logic into a story.
In response to some unknown stimulus, a portion of our immune system has been switched "on", and the switch is stuck in the "on" position". No one knows why. Some commonalities have been identified, but there's nothing really consistent that we know of yet. Most patients are over 50, about 85% are female, many have Northern European ancestors. As a normal function, our bodies produce this inflammation to do maintenance work cleaning up and disposing of whatever we've been exposed to, whether a virus or a bacteria or something in the environment. When everything is working the way it's supposed to, it's a good thing. But our switch is stuck, and we're producing more of this inflammation than we need, and it's not moving through our systems the way it's supposed to.
At first, we're prescribed a higher dose of pred to both suppress the overproduction of new inflammation, and to clean up the overproduction backlog. To guard against osteoporosis, we take calcium, and to deliver the calcium, we take Vitamin D3 (both taken at a different time of day than our pred dose). Most people say reducing carbs helps with controlling weight gain and reducing elevated blood sugar, and reducing salt helps with fluid retention and blood pressure elevations.
When we reduce too far, pain and stiffness symptoms return, because we're not taking enough pred to control the overproduction and cleanup of inflammation.
That's why we say go slow, and take small steps in each reduction, to find the current balance. The small reduction steps (less than 10% of the previous dose) help us differentiate between "withdrawal" symptoms (which are pretty mild and last a few days), and flare symptoms (which get worse as the days go on).
The current balance can change when new stress - environmental, mental or physical - upsets the balance. If you do too much physical activity, get a cold or other infection, sustain an injury, are subjected to a big emotional upset or don't get enough rest, you can expect to have some level of return of symptoms because the inflammation is on the rise again.
So sometimes we'll have to take a step or two back in our reduction, sit there a while, and wait to see if we've gone back far enough. Very often, if the source of the stress abates - environmental, mental or physical - we can restart the reduction.
Sometimes we can't reduce again for a longer time because our condition has not burned itself out enough for this strategy to be effective, so we wind up sitting at that level for longer.
The idea is to prevent major flares, or having to return to the original dose or even higher, to regain control.
It's said that the average duration of the condition approaches 6 years, so we're talking long term here.
Then there's what I'm calling the recovery phase. Once the condition has abated to normal or near normal, we need to wake up our adrenal glands, which stopped producing cortisone because we were taking pred (which is cortisone once it is metabolized). This is the point where we're reducing from 7mg. Most of us will eventually see a return of our natural adrenal function, though this can take a year or more. Some of us won't get a full return of our natural cortisol production. But at this level, the pred we're taking is replacing that adrenal function at a normal level, and so side effects are no longer of much concern.
Again, I'm not a medic, but this is what I've understood and experienced myself. I'm just over 2 years in, started effective treatment at 20mg after a couple of false starts, took on a major flare when the initial reduction was too steep and too soon, and have reduced to 6.5mg with no flares after taking complete control of my taper.
I'm sure one of our resident experts will come along and give you a more professional explanation, (and clear up any major errors) but in the meantime, I hope this helps.
Thank you for taking the time to write this helpful and comprehensive reply, much appreciated.
So, for clarity, the likelihood is that the body is only producing a small amount of inflammation nightly (unless there’s stress, injury, infection etc.), which the smaller amount of steroid manages?
Again, I'm not a medic, but as I understand it, when things are working normally, our bodies produce inflammation in sufficient quantities to clean up whatever we've been exposed to - a virus, a bacteria, mold, fungus - whatever - in sufficient quantities to basically render the invader (for lack of a better image) harmless. We're exposed to invaders and irritants all the time, every day. Some we get rid of without even noticing much in the way of symptoms, or notice nothing at all. Other things - a cold or the flu, for instance, make us feel stiff and sore. That's our immune system working as designed.
In response to the presence of inflammation, our bodies produce cortisol to move the inflammation and other debris along to elimination. Increased inflammation creates increased cortisol.
With PMR & GCA, our bodies are producing an excess of inflammation, and our adrenal glands are not producing enough cortisol to complete the elimination process. That's why we need the increased cortisol, which is metabolized pred. Our adrenal glands, left to themselves, just can't make enough.
But because our adrenal glands think there is way more than enough cortisol in our systems due to the amount of pred we're taking, they stop making cortisol. That's why the balancing act of taking enough, but not too much pred, is so delicate.
The starting dose is one that is enough to manage the inflammation AND there be enough to mop up all the existing accumulated stuff. It's going to be too much to just deal with the daily dollop so once the symptoms are well controlled you start to reduce slowly to find the lowest dose that achieves the same result as the starting dose did - which is generally much lower and so associated with fewer adverse effects.
Think of it like a bucket under a dripping tap: the bucket will fill up and eventually overflow whatever speed the tap is dripping. So you can empty the bucket and then use a cup to take out some water every so often - that will slow the bucket filling up. If the cup holds more than the tap is dripping, the bucket won't fill up and can't overflow. If the cup is too small, it will eventually fill and overflow though take longer.
The adjustment of the dose accounts for the speed at which the tap is dripping - you take less and less until symptoms start to appear again and go back to the previous dose. Staying at each dose on the way down means you can be sure this one is still enough. This adjustment is used a lot in medicine but mostly starting with a low dose and adding to it until you find the dose that controls your BP or whatever it is. You could do that with pred - but until you have cleared out existing inflammation you won't know if it is enough and it will take much longer. This is a springclean followed by daily dusting. Some people manage fine with a bit of inflammation - others are very sensitive to it starting to build up and can feel the dose isn't quite enough. Others may ignore the signs until the bucket is full and then hit a full blown flare. It is important to be honest and admit there are some signs of left-overs filling up the bucket. Listening to your body is key to a decent quality of life with PMR.
Thanks for your knowledgeable and helpful reply (again!)
So, am I right in saying that all the time the tap is dripping the steroids are needed (albeit in smaller quantities)?
My question therefore is why does anyone think they can taper to 0? The bucket is still filling if there is no prednisolone? I really am missing something, surely?
You will get to zero OK if the tap has stopped dripping - for 95% of patients the underlying cause of PMR will burn out and go into remission sooner or later. The percentage who get to 1mg and have to stay there is very small - what we're saying though is that you have to be aware and not in denial. If you nab it quickly you probably won't need to go above 1mg again - especially if you went down the last few mg VERY slowly, and didn't go directly from 1mg to zero. 1mg is so little it is worth taking a couple of months at 1mg, using one of the slow approaches to taper to get to and then stay at a couple of months at 1/2mg and then the same using zero as the new lower dose. It is a dose as much as any other figure.
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