pain pain

[Glyngin]

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

[PMRpro Ambassador]

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 in reply to PMRpro]

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 PMRGCAuk volunteer in reply to Glyngin]

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

healthunlocked.com/pmrgcauk...

[PMRpro Ambassador in reply to Glyngin]

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]

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]

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

[Salukimama]

Had a very similar experience last year. Cried out in the night it was so bad. I'd actually stopped taking pred and really did not understand this crappy condition at all nor the need for continual self assessment and understanding the use of pred. As soon as I went back on pred at 15mg I was fine. No doubts in my mind about PMR. It's hard to get to grips with it!