I’ve had PMR for 8 months now. I’m taking 5mgs of prednisone at the moment. My question is.
Should the aches and pains go away?
Blood tests all report everything is in normal range. My pains has all decreased. On waking my aches and pains are all there and it’s not until the evening do I feel anything like normal
Hi and welcome!
I suspect that what has happened is that you have reduced your dose of pred to a level that isn't enough to manage the inflammation well. But it would help to know a bit more.
What dose of pred did you start at? How much relief from the aches and pains did that starting dose give you? And at what dose did the aches and pain start to return? What time do you take your pred? And what sort is it - is it plain white pills or are they red or brown, looking a bit like small Smarties/M&Ms?
Pred doesn't cure anything - it is a management strategy which combats the inflammation that is caused by an underlying autoimmune disorder and so relieves the symptoms of pain and stiffness. But that underlying disorder carries on in the background, creating inflammation every early morning which causes symptoms again until your daily dose of pred gets into your system and mops the inflammation up - and the symptoms ease.
To have got to 5mg in just 8 months is very fast and it is quite likely that the underling disease activity is still quite high - and you are now on a dose that isn't enough to keep it under control. But we need to know a bit more - so please answer my questions above so we can help you better.
I take the small white tablets. I went from 15mgs to 12.5 after 3 week. Then 12.5 to 10 in another 3 weeks. Then 10 to 7.5 after another 3 weeks. 7.5 to 5 after 6 weeks. I felt the best on 7.5. I also had blood tests whilst on this dose that blood level were in the normal range. After being on 5 for 4 weeks, my pains were getting worse. So the Drs put me on 6. Another 6 weeks past and after another blood test my blood came back as being in the normal range. So I’ve been on 5mgs for 2 weeks now and am due to go to 4mgs in a months time. I seem to have a few good days followed by a few bad days. The Drs have now given me a leaflet stating a dose regime which shows a slower reduction in doses that I’ve in.
I take my prednisone in the morning with other medication. Including heart medication, diabetic insulin, pain medication and now from last week, medication for osteoporosis
Thanks - that is brilliant. Just what we needed.
That was a very fast drop - from 10mg the recommendations are for a reduction of only 1mg a month. More is predictive of a flare and that is what has happened.
But it sounds as if your doctors have fallen into a very common trap: that of looking only at the blood test markers which are often misleading. It isn't uncommon for blood markers not to show a flare until long after it is well-established. Symptoms ALWAYS trump lab results. If your PMR symptoms return, you are now at a dose that is too low for the amount of inflammation created each day. Any that isn't mopped up builds up and you soon get symptoms. It is like a dripping tap that eventually fills a bucket and overflows - unless you scoop some out every so often.
You probably need to find a doctor who will let you go back to 7.5mg - or for a week at maybe 10mg to have a springclean and then go to 7.5mg. The aim is to have you on the lowest dose that gives the same level of pain relief as the starting dose did, the lowest effective dose. It doesn't mean you won't get lower - just not yet. You are way ahead of the curve on tapering the dose - it would be a shame if they spoiled what you have already achieved.
Have you got another doctor in the GP practice who would help you do that?
This paper
is unlikely to mean much to you but Recommendation 5 in it should mean a lot to at least one doctor in your practice and encourage them to raise your dose for the short term to control the symptoms and then leave you at a dose that maintains that relief of symptoms.
Then 10 to 7.5 after another 3 weeks. 7.5 to 5 after 6 weeks
That’s maybe where your issues escalated - and as I said the bloods don’t tell the whole story - as many on here will testify.
Below 10mg the suggestion in the guidelines -reduce 1mg every 4-8 weeks and a recognition that not everyone can achieve that -
However, there is no consistent evidence for an ideal steroid regimen suitable for all patients.
Therefore, the approach to treatment must be flexible and tailored to the individual as there is heterogeneity in disease course.
Some benefit from a more gradual steroid taper.
Dose adjustment may be required for disease severity, comorbidity, side effects and patient wishes.
Some can do a faster taper, not disputing that, but it you overshoot the dose you need whilst tapering quickly, it’s sometimes difficult to know what your sweet spot was - and more importantly know what to go back to.
Hi and welcome,
As this is your first post, don’t know if you’ve seen this link, if not maybe have a look - and ideally you shouldn’t feel out of sorts all day .. but to be at 5mg within 8 months is a very rapid taper. That and the ongoing daily feelings suggest your PMR isn’t fully under control - morning are usually but difficult, but once the Pred has kicked in it should improve.
healthunlocked.com/pmrgcauk...
You might need to give us more specific info to work out exactly why - but I would say too fast a taper, maybe you not adjusting lifestyle to manage your illness, or your body not processing Pred as well as it could. It might just take a few tweaks to give you a better life, but we do need to what you are or aren’t doing to help.
My gosh those are huge drops, I would have been curled up in a ball at that rate of reduction. Under 10mg people usually do not drop more than 1mg every four weeks, in fact 0.5mg is recommended at lower doses. Try not to reduce more than 10% each time. Although this is not quite possible when you get really low.
I went from 15mgs to 12.5 after 3 week. Then 12.5 to 10 in another 3 weeks. Then 10 to 7.5 after another 3 weeks.
Hello Andy, the reduction you were given is the same one I had in the beginning. I think it is the standard guideline that the GPs follow. I didn't deal with it very well either and the other members are right, it is too much too fast. If it wasn't for the advice on this forum I would have been in a right mess, and probably quite ill. I hope you find a better way forward now with the support here. G.
Thank you for your post. They have helped considerably. Yes I believe I’ve gone down to quickly. I shall go back to my doctor to get my prednisone increased and hopefully deal with my pains etc and a slower pace of reduction
5 mg of prednisone is a very small amount. I started at 15 mg 2 years ago and am only now at 7.5 mg.
It’s possible that if you increased the dosage you would be more comfortable.
5mg isn''t really considered "a very small amount" - especially by doctors when it is your daily dose over years!
My daughter was on a much higher dose for almost ten years before a biological came along that could help her more and without the side effects. She and her rheumatologist are constantly reminding me that 8 mg is not a large enough dose to be fearful about. And yet I still want to taper and eventually get off steroids altogether. I had thought this would all be behind me by now.
I don't consider it a big dose either but many doctors are terrified of it and force patients to reduce before they are ready. I'm on 7mg even with a biologic - one that is unlikely to be available to me in the UK which rather colours my thoughts about returning to live with my daughter!!
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