Advice needed on fine tuning prednisolone - PMRGCAuk

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Advice needed on fine tuning prednisolone

Jackie_boy profile image
11 Replies

I’d be grateful for confirmation of my present issue with Polymyalgia from anyone on the site. I’m coming up to two years since diagnosis and having started on 15mg if prednisolone, have managed to get down to 7 without any problems but struggled to go lower. I had planned to try again with a lower dose and unfortunately had a bad fall a few weeks ago which damaged the rotor cuff muscles in my right shoulder - lots of pain and some general shaken up feelings despite the fact that I am pretty fit and exercise regularly. I’ve now started to have what seems like a flare up as both shoulders are painful and I’m feeling very tired and shaky. Do I take the advice often given here to up my dose by 5mg for a week. A few days? Longer? until things improve? The pain is nothing like the original level when I was first diagnosed, I just don’t want it to build up into a major flare up. I don’t have access to a rheumatologist as I’ve never been referred to one and my GP is sympathetic but doesn’t go for fine tuning of prednisolone,. Thank you to anyone who can advise.

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Jackie_boy
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11 Replies
SheffieldJane profile image
SheffieldJane

I am sorry about your nasty accident. I agree with your plan A. I think it’s your best chance of avoiding a reactionary flare. Good luck!

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Ouch!

Maybe follow the advice given part way through this linked post, amending doses to correlate with your current dose -

healthunlocked.com/pmrgcauk...

Then I would suggest, as 7mg seems to be bit of a sticking point - a slow taper similar to this…and only 0,5mg a time.

healthunlocked.com/pmrgcauk...

Two years is not that long into many people’s PMR, despite what you may read online or be told by doctors…and at the dose you are on, adrenals need to start thinking about reawakening….so slower tapering helps all round.

Jackie_boy profile image
Jackie_boy in reply toDorsetLady

Thank you for the helpful references which will be very useful for my attempts at tapering again - eventually!

TheMoaningViolet profile image
TheMoaningViolet

Hi, it sounds like you may have adrenal issues here, given the dose you are on, the fall and the symptoms you mention. If I was facing the same dilemma, I guess I would most likely attempt to do what you are suggesting for a week or 10-days and then drop down to 7 again.

Given that you have been on steroids for a long time, I would look into the adrenal glands function since your sticking point seems to be when one would expect the adrenals to kick in during the taper. Perhaps you could request a synacthen test once you have recovered from your fall. Good luck.

PMRpro profile image
PMRproAmbassador in reply toTheMoaningViolet

It is still a bit high dose for a synacthen test - it will almost certainly show no or little adrenal response. Most endocrinologists like to wait to below 5mg, preferably 3mg.

TheMoaningViolet profile image
TheMoaningViolet in reply toPMRpro

Ah, I forgot about that. x

PMRpro profile image
PMRproAmbassador in reply toTheMoaningViolet

So do a lot of doctors I suspect!

PMRpro profile image
PMRproAmbassador

It is accepted that even a fall can be enough to trigger a flare of PMR - there is even a paper about it!

I would certainly try more pred if it were me - but in the immediate aftermath , there is also a potential need for more corticosteroid because your adrenal response is blunted and while it normally would spike some cortisol to help your body deal with the trauma, it doesn't do it well and you are now at the point where the dose leaves nothing over from dealing with day to day events. There is an article in the FAQs about Sick Day Rules - maybe showing the Leeds booklet to your GP may help him understand what you need to do?

The 5mg recommendation is for when you have overshot the dose you need while reducing - more than a real flare as such. It would probably help - but the question is whether this is a real flare where you might need more or for longer.

piglette profile image
piglette

Personally I would go for the increase of 5mg for a week or so and see how you go from there. You can always drop back again after hitting the PMR on the head if needed. Falls etc can trigger problems sometimes.

Jackie_boy profile image
Jackie_boy

Thank you for all those helpful responses. I’ll try a week or so with added 5mg and see how it goes. It’s such a help to have answers from others’ experience and I’m impressed that so many of you take the trouble to reply so quickly.

MaritimeMags profile image
MaritimeMags

Yes, I would increase by 5mg (and another 5mg, if symptoms not improved). Then start reducing gradually if symptoms subside.

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