Many posts and replies cover the tapering of preds down to a low maintenance level and what to do about flare ups along the way and these are invaluable but not so much has been written about
the weening off of the last, say 1.5 - 1 - 0.5 mg - how do you know that it's time to take that final leap into Club Zero and that the PMR is truly in remission (apart from taking that leap of faith and keeping your fingers crossed).
I find even less written about the possibility of over treating i.e. where you could actually be taking a dose appreciably higher than your condition actually requires at that point in it's course. An example of this being:- perhaps because of the standard starting dose being 20/15 you are stuck with tapering from this number when, in this hypothetical case, the level of PMR, only requires, say, 9. For months then the patient is effectively over treating, possibly inducing side effects that might best be avoided.
Another scenario is that a patient could be patiently following all the slow tapering advice and still have some way to go to reach Club Zero but that the PMR has already departed the body and so again effectively they are not only over treating but treating a condition that is no longer there.
In short I suppose I'm asking "how do you know when it's gone"
From my post, shooting at hypotheticals like this, you may have identified me as a non sufferer of PMR and you would be right. I am, I hope, a supportive 'other half' , trying to understand the course of this condition and get a handle on the why's and wherefores.
(My wife is 8 months from diagnoses and start of preds. She is just tapering 9 to 8. - we follow pmrPro's slow approach. No flare ups to date ; Pain well controlled but fatigue ++ hits in every 3 or 4 days.)
Last query: With all this concentration on getting the tapering right, am I given to understand that the PMR condition is also tapering in it's intensity throughout it's progression and we are just trying to be that one smidgeon above the pain management level with the pred or have I got the wrong end of the stick on this?
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My understanding is that decisions around pred dosage / tapering schedule rates should be driven mainly by symptoms (i.e. +/- pain / stiffness, energy levels etc, and blood tests): and this principle applies throughout the often very indeterminate course of PMR (i.e. 'self limiting').
Having said that, it'll be interesting to hear what others here have to say, especially about the 'burn-out' path. The PMR / steroid equation can seem like a case of the 'tail wagging the dog', but I fear that this is how things are: and maybe one of the challenges is getting our heads around the concept? (it was for me)!
"In short I suppose I'm asking "how do you know when it's gone""
That's the million dollar question and one to which there is no answer besides - can I get off pred! That last step is very ticklish - and there are a number of people on the 3 forums who have got to 1mg/day, even 1mg every second day, been persuaded to stop and who have had a relapse within weeks or months. The underlying pool of inflammation may have been well cleared out, the daily dose of new inflammation may have been managed by that very small dose but eventually, like a tap dripping into a bucket, it overflowed.
The establishment of the starting dose has been a movable feast really! It used to be higher - 30mg or even more was common, followed by far speedier reduction than the ones we push here. Then some fairly small-scale studies decided that for most people 15mg was enough to achieve relief of symptoms and that would reduce the problems associated with the higher starting dose. One study in Italy found that 12.5mg/day starting dose would achieve remission (drug-induced) in 75% of patients within a month. A better result was found in patients who were smaller/lighter than in big men - there is a weight-dose relationship. I was started on 15mg - I had a miracle in 6 hours. Could I have been started on a lower dose? Maybe - but it took me a very long time to get below 10mg for any length of time. 10mg might have been OK but I would have been stuck there. And when you have been in pain for a few months (or years) the quicker that relief appears the better you feel.
There is some anecdotal evidence that a higher starting dose can result in a shorter period of treatment or fewer flares - hitting it hard to start with pays. So the most recent recommendation say start at a dose between 12.5 and 25mg/day - and not below 7.5mg or above 30mg. See Recommendation 3
They recommend tapering to 10mg over the next 4 to 8 weeks - good when that works, but our experience tends to suggest many patients struggle. Perhaps they'd struggle less if they had started at a higher dose? Where these problems occur it is possibly patients who are very sensitive to the change of dose - how can you tell whether this is a flare or just steroid withdrawal problems? Using the very slow reductions we push avoids the steroid withdrawal problem so you are less likely to jump back to the old dose without need when you do have problems.
Just a brief diversion - the fatigue kicking every few days suggests a bit more attention to pacing might avoid that. She's feeling good, doing too much, resting, rinse and repeat. If she did marginally less or rested a bit more she might avoid the mini-boom and bust you suggest.
Right - excuse me for a while, I'll answer the rest when I get back from my walk...
PMR is due to an underlying autoimmune disorder that causes the immune system to attack your body tissues by mistake, which is what causes the damage that leads to inflammation and swelling. The vast majority of such autoimmune disorders - rheumatoid arthritis, lupus, some forms of MS - appear to have a cyclical sort of activity. That means that you may be able to reduce while it is quiescent, but then have a flare that increases the activity. In general though, it is probably over a longish period that this cycling occurs. One of the worst things you can do is get into a yoyo pattern with dose - because for some reason it seems to make the body less able to cope with the next reduction - and that is as good a reason as any to progress slowly down the dose rather than shoot down and up over and over again. Big steps down tend to induce similar symptoms to a flare: steroid withdrawal rheumatism it's called.
I think that generally most of us would say we know the cause of the PMR is still there - the fatigue, sweats (they aren't always due to pred) or the other longer lasting symptoms that don't change greatly with pred. It doesn't do anything for that autoimmune disorder, just manages the symptoms. A few people have said that one day they woke up and felt "different" and subsequently were able to reduce to zero. One lady did, got to zero - and about 3 months later back came the symptoms. Back to 10mg and has to start over again - if she'd stayed at 1 or 2mg might it have kept it quiet? We'll never know.
Yes, the idea is to find the dose that just manages the daily dose of new cytokines (the inflammatory substances) fairly quickly. I don't think the disease cycles a large amount, so on average by reducing slowly and steadily you probably won't have too much excess. The best approach is to get to under 10mg fairly fast - IF it works. For some people the changes in dose are as difficult as the illness itself. Resting plenty certainly seems to help that aspect for a lot of people - getting exhausted can sometimes trigger a real flare. By no means everyone is pain-free, or physically as well as they'd like. But having tried out PMR with and without pred, I haven't found any side effects that were so bad I considered stopping pred - and, believe me, I had some delightful ones!
By about 8mg you are taking what is called a physiological dose - about the same amount of corticosteroid that the body would be making in the form of cortisol daily anyway, it is essential to life. Below that point there is no real excess of steroid which is what leads to most of the unpleasant side effects, so they should be minimal. Of course it doesn't always follow the theory but in general the side effects are tolerable at that level. But then another consideration joins the equation: your adrenal glands have to wake up and start to function again. Depending on how long and at how high a dose you have been on pred, it may take quite a time. The slower you progress with the reduction here, the less likely you are to have discomfort, increased fatigue or even an adrenal crisis - and they are nasty, even requiring hospital admission, it can be life-threatening. That's why you NEVER stop pred suddenly after you've been on it a couple of months, at any dose.
It is said that about a quarter of patients are off pred in under 2 years - but they are at a higher risk of a relapse later. About half take up to 4 - 6 years to stop pred, the rest of us a longer term captives and may need a low dose of pred for life. The standard German textbook quotes an average duration of 5 years for PMR - which I'd say fits with what I've come across on the 3 forums over the last 7 years. Why the English-speaking rheumies are so adamant that it "lasts a couple of years", some even say one year, I have no idea - it just doesn't match our experiences.
I've probably not responded to something - tell me if so and I'll have another go!
Whilst herself is out for a walk, I'll add my two pennies worth!
As we all know, PMR or GCA doesn't seem to abide by any normal rules, it seems to come, and go of its own accord, and all we can do is keep the inflammation under control as we reduce our Pred. As you rightly surmise, lots of us probably take more Pred than is actually necessary over the years.
Trouble is the starting point, as PMRpro says, is a bit of a moveable post - depending on severity of symptoms, how soon the illness is diagnosed, body size, and how happy the doctor prescribing is with Pred anyway. They all recognise it's the only drug, but not many like its long term effects, so sometimes don't start on high enough doses.
Plus, you can't say to yourself - right I think the PMRs gone, I'll stop the Pred and see - unfortunately is doesn't work like that. If it had gone into remission, you would get horrible steroid withdrawal symptoms, and your adrenal glands would not be in a fit state to start working again. If it hadn't gone into remission, you'd be back to square one! Not a risk many would want to take.
When you get to the dose your wife is on now, her adrenal glands should be waking up, but sometimes they take a bit of nudging! so she should expect a bit more fatigue than perhaps she's had since starting Pred, plus as PMRpro says maybe because she is feeling better, she is doing too much some days.
I don't think many of us realise at the start how much Pred affects the rest of the body, we're just so pleased to be out of constant pain, or had our sight saved (partially in my case) that we just take it. It's only later down the line we realise all the bad things that come with the good. But I suppose one could say that of many medicines.
As for your last comment, I couldn't say, hand on heart, that the PMR/GCA condition is always declining along with the Pred reduction. One hopes it is, but sometimes it never goes away. The ideal scenario if it doesn't go into remission, is to take just enough Pred to control it! And that, is a work of art!
Sally and I are so grateful for the time and effort you three have put into these posts. We will draw on this information for months to come and no doubt will refer to it repeatedly over the coming months especially if we find impatience trying to drive the show.
Hopefully, others, too, will have had some of their outstanding queries answered by these full explanations.
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