So saw a doc today an English doc today here in Australia as this ongoing upper respiratory infection and the ‘out of breath’ symptoms were driving me nuts.
I was feeling a bit better when I saw him. He said possibly Covid as tests are only picking up about 50% of cases at the moment.
Anyway told him my saga of thinking that I had a PMR flare that I went up to 10mg for about 8 days and was tapering down when I got the Upper respiratory infection - so went up again and am tapering down - on 7 today.
I told him that I had tapered from 5.5mg to 5.25 VERY slowly over two months. He said that was too slow and that I should come down 1/2mg every two weeks. He studied rheumatology in Bath UK.
thoughts please - is this ok?
I like him as a doc but is there any info that I can give him if I should do it slower.
Thanks all.
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Slosh
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I can understand why he thought your taper was very slow… but did he ask why you need to taper so slowly?
Unfortunately couldn’t find a specific taper showing a smaller drop - apart from this link - and that still says below 5mg - 0.5mg every 2-4 weeks -see picture
- but in most advice it states it’s an individual thing based on how long the patient has been on steroids, and at what dose etc, etc.
Our advice of not reducing more than 10% of current dose came from an endocrinologist - but not sure if it was made in a lecture or if it’s written anywhere - PMRpro may have more details .
I don't care where he studied rheumatology - that rate of reduction may work when pred is used for a flare of other rheumatological conditions, it almost never works in PMR when patients have been on much longer term pred.
The taper DL quotes probably derives from the same sources as this article
"... glucocorticoid withdrawal is also fraught with risk, including loss of disease control and adverse withdrawal effects, including the potential for life-threatening adrenal insufficiency. As indications for glucocorticoid therapy are so diverse and response to withdrawal so complex, blanket guidance will always be imperfect. Healthcare practitioners need to understand and apply the general principles of deprescribing to ensure safe and effective withdrawal of glucocorticoids for individual patients."
They also present a case where a PMR patient tapered from 15 to 2mg over a mere 8 months and became unwell at 2mg.
Earlier in the article the author is unable to account for the widely quoted physiological level of 7.5mg and the actual amount of cortisol secreted by the adrenals, equivalent to about 2,5mg - I suspect it is real world experiences where many patients start to display adrenal insufficiency-type fatigue and other symptoms at about 7mg. The 2.5mg figure has been more recently established but patients definitely suffer fatigue far sooner. I also suspect it may be unreliable HPA axis performance in real life.
Whatever the case, below 5mg there are 2 factors at least to be considered because the underlying cause of the PMR is almost certainly still active at a low level until proven otherwise, inflammation is still being produced at a low rate but will build up if the pred that is controlling it is removed altogether. The only way of demonstrating that the PMR is in remission is VERY slow tapering of the dose. At each level of dose, time is required to be sure that the new dose is still adequate to control the inflammation. Two weeks is NOT long enough. I would dispute that 4 weeks is either but it is more reasonable.
Every patient is different - and some take longer than others to show a dose is too low but one thing is essential - the patient must not end up with a flare that is going to set them back by months with needing a higher dose to control it. If that means taking twice as long to taper the last couple of mg where the potential adverse effects are minimal - so be it.
I think every patient should hang a notice round their neck on a visit to rheumy/GP that reads: “Every Patient is Different” and on the other side: “The Lower the Slower”.
Thank you - great paper and I will also read the link adrenal insufficiency article.
My inflammation markers were low - however when I had the blood tests I had already increased the Pred for a few days. Also as the article says there is a lag time. When I was first diagnosed my ESR and CRP were not too elevated but my Ferritin was through the roof.
I did ask him if those patients were steroid dependant and he said yes.
Anyway I will taper slowly and stay at 5.5 for a little while (month or three) as that’s where I seemed to be stable.
Perhaps will ask to see and endo next year? What are your thoughts?
If you have a helpful GP you can ask for a basal cortisol to be done and get an indication of whether it is worth the hassle! We know how to interpret it even if they don't ...
Gosh, think I’ve only managed to reduce 0.5mg this year! On second attempt to reduce another 0.5mg. Nearly 6 years down the line and on 6.5mg. Everyone really is different.
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