pain pain : what an awful night😢 Pains all night... - PMRGCAuk

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pain pain

Glyngin profile image
Glyngin
•6 Replies

what an awful night😢 Pains all night around my lower back & hips no sleep at all.Dont understand it was down to 4.5mg prednisone after 4 years of up & down. Was feeling so good for 5 weeks on 4mg then 😣 ugh.Don’t understand this why!! Really wondering if it’s not pmr but something else.Any advice would be appreciated better than seeing a dr.

Thanks

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Glyngin profile image
Glyngin
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PMRpro profile image
PMRproAmbassador

It can take weeks - even months - for a dose that is marginally too low to manage all the inflammation to allow the left-over inflammation to build up to a level that you experience symptoms. You aren't reducing relentlessly to zero - you are looking for your lowest effective dose. That varies over the years as the underlying disease progresses, hopefully always getting lower, but if you overshoot it at any point, the inflammation from the ongoing autoimmune disorder builds up again, like a dripping tap fills a bucket and overflows if you aren't scooping the water out somehow.

We say 2 weekly reductions don't allow enough time - but it can take a LOT longer than that. However - it is usually a slow build-up. Had you done anything in the last few days that could have caused a muscle/soft tissue injury?

Glyngin profile image
Glyngin• in reply toPMRpro

No nothing has changed since tapering ( by 0.5mg a month) so really don’t understand it.

Really don’t want to increase again but guess I have to.If I go up to 10mg yet again will I have to slow taper?

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer• in reply toGlyngin

No -use the flare protocol as described in this link - but back to 5mg not 4.5mg

healthunlocked.com/pmrgcauk...

PMRpro profile image
PMRproAmbassador• in reply toGlyngin

No - just for a few days to clear out the inflammation and then back to slightly above the dose that is not quite enough. It doesn't have to be much too low - the drip of inflammation builds up over time.

4Immune profile image
4Immune

I hear you. I have not had pain at night for along time, as my rheumatologist put it when coming out of remission it feels worse then before. I have the same symptoms you are stating and my SED rate and CRP are both up, so I most likely will be put on a temporary Prednisone taper. I feel for you, I hope you find some relief. Hang in there.

Glyngin profile image
Glyngin

Thanks for understanding.This is such a rollercoaster which feels as if it will never end😢

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