Fairly new to PMR 3 month in and feel like I am g... - PMRGCAuk

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Fairly new to PMR 3 month in and feel like I am going back wards

Yogurt55 profile image
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Fairly new to PMR 3 month in and feel like I am going back wards. Good morning every one I wold just like to seek so experience form the PMR community. I was diagnosed with PMR 3 month ago and have been on Pred I start on 15mg and now down to 10mg for the last month, in the last week my legs and right upper arm have become increasingly achy for most of the day. Would you say this is a flare up? or too lower dose of Pred. I am a bit concerned I am going backwards. If it is a flare up form experience how long do flare ups last?

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Yogurt55
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PMRpro profile image
PMRproAmbassador

The most common reason for a flare in symptoms is having gone to too low a dose of pred to manage the symptoms. The pred doesn't do anything about the actual disease process that causes the inflammation which is what leads to the symptoms, it chugs along in the background like a dripping tap while the pred mops up the puddle that results. So really when symptoms reappear after reducing the dose it is most likely that the new dose is slightly too low to manage the daily shot of new inflammation so what isn't mopped up mounts up until the symptoms can be felt. It may well be that 11mg is enough - even 1/2mg can be the difference between OK and not OK.

To be down to 10mg after 2 months is far too soon - most recommendations for management of PMR suggest at least 15mg for 6 weeks, 12.5mg for 6 weeks and then trying 10mg - and even that is too fast for many people. If I were you I would try 12.5mg for a few days and then reduce just 1mg at a time at most - that way you might find that 11mg is enough rather than going back to the original dose .

There are slowed tapers that make it a bit easier - not dropping from every day one dose to every day the new dose without a bit of a cushion. But in your case, I don't think this is the result of the rush, it is simply you are now not on enough pred for the state of your PMR at the present. You will get lower, just not yet.

healthunlocked.com/pmrgcauk...

but there are others,

Yogurt55 profile image
Yogurt55 in reply toPMRpro

Thank you for the advice. I will try to increase my dose. I was working with my GP on dosage and I think like most GP's they don't have a great understating of PMR and he was using the guide line set out buy NICE.

PMRpro profile image
PMRproAmbassador in reply toYogurt55

But it is a guideline - when it suits them doctors will claim they aren't set in stone! But we know from personal experience that the reductions they suggest in the literature don't always work in practice!

Rugger profile image
Rugger

I took 6 months to get from 15mg to 9mg, via 13mg, 12mg, 11mg and 10mg. We're all different, but it gives you something to compare.

Best wishes.

Yogurt55 profile image
Yogurt55 in reply toRugger

Many thanks

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