Is tapering slow below 7 mg pred because pain stems from pred withdrawal rather than PMR?

Great questions, I can only answer your question with regard to a Prednisone taper for other illness. As a life long asthmatic I've take Prednisone a lot over the years and until recently (the last year or so?) I was told to taper at 5mg per day. But now after a weeks course of 40mg per day I just stop - well at least I used too! Now I go back to my previous dose.

No , the reason it takes more time below 7-8mg level is that our body needs about 7-8mg of cortisol to function. When you start reduction below that level ( also called physiological level) then our adrenals have to wake up and top off the missing quantity of cortisol. So as you reduce more, they need to produce more on their own and that takes time. Lack of cortisol can feel as fatigue and/or PMR pain. If you have those symptoms in the first week of reduction, then it is from steroid withdrawal and it should improve over time. If you have reduced too fast too low, then the same symptoms will appear but they will get worse with time, eventually leading to flare. In second case it is best to react quickly and go back to previously known "pain free" level.

Below 7mg there are 2 factors at play - and both are important with regard to the slow taper.

Obviously you would hope that in the meantime the cause of the PMR symptoms will have gone into remission and you won't need pred at all - but since the median time to get to 5mg is about 18 months and the median duration of PMR is just under 6 years, it is realistic to assume you will need to be at a lowish dose for some time while waiting. And the lower your dose gets successfully the nearer you get to that low dose - so caution is required to identify it most exactly without ending up with a flare. Steroid withdrawal can be avoided pretty well by most people by using one of the very slow approaches to reduction we bang on about from the PMRGCAUK charities - even using the Dead Slow approach it is possible to drop 1mg per month (or more) which isn't that slow in context. You can spread it over longer - and use just 1/2mg at a time if you personally struggle with the changing dose.

Then there is the return of adrenal function - and that is a topic for anyone who is on pred at a moderate dose for more than a few months and at a higher dose for more than a few weeks. So Elizamac has been able to drop 5mg per day or even straight back to her usual dose without problems after a week - but if she had to be at 40mg for a month or two or even longer, as GCA patients often are, then the reduction would have to be over a much longer period. And then you have to add in how long you have been at above about 10mg - above that the body senses there is enough corticosteroid for normal purposes present and, like your central heating boiler, no more is produced to keep things stable rather than overheating. So the adrenal glands go into hibernation - and the longer that goes on, the less enthusiastic they are about waking up, and eventually, like muscles, it is a case of use it or lose it and they actually atrophy.

Once you get to about 7mg the amount of corticosteroid is borderline - enough to deal with day to day events but possibly not bigger stress and so the adrenal glands have to stir and launch a staged return to work to make up the difference. As the dose falls - so the adrenal glands must take up more of the strain. As we age their function falls away anyway - like any other part of our bodies. For some people it doesn't pose a problem and as they reduce steadily the adrenal glands take up their role again. For others, it is much harder and for a few function never returns to normal.

The smaller the steps the less effect they will have on you and the more comfortable it feels. The readjustment of producing cortisol isn't a simple case of turning up the thermostat and amount of gas burnt. It is a very complex feedback set-up where is you tweak one thing and five or six other things have to adjust too - just like if you put a bit less flour into a cake you have to adjust other things too for it to work. Make a small change and everything else has to change less too and you are less likely to notice. Make a big change and it can feel like an earthquake.

Basically you are trying to manage 2 totally different problems without either of them having a major impact on your life. If the PMR is still active you need the right amount of pred to subdue the inflammation - but at the same time you want to be at the lowest dose possible without overshooting. Once you get to 5mg or so you need to persuade your adrenal glands to wake up. Either way, changing things slowly will be more comfortable and makes it easier to avoid the 2 pitfalls: a flare because you have overshot the right dose or an adrenal crisis because you got too low too soon and your adrenal function couldn't keep up.

Sorry - you didn't expect a sermon did you ...

Hello

I must congratulate you on your very comprehensive description of steroid reduction. I have had three relapses of PMR due to mismanaged steroid reduction.

I shall print off your message for future reference. I have found that once you reach 7mg a day, and try to reduce, that is when it does become tricky and one has to listen to one's body and react accordingly to adjust the dose. Every time I came off the Pred I did not have any pain, but at the same time I did not feel well. My immune system had not adjusted enough, and I then suffered a urine infection, and then back onto the Pred all over again - so frustrating. I am now starting my 6th year. Hopefully, I will achieve a lower dose and perhaps come off them altogether - although I know that one third of people are not so lucky and always suffer from PMR.

Gill