Do you think this is a PMR flare and if so how should I manage it?
Posted , 12 users are following.
First of all - apologies for many typos to come - doing this at speed
My PMR started in a non typical way - let's call this phase 1 - I has lots of pain and stiffness but mostly is lower body- though crept into upper body a little eventually. Did not come on suddenly but in creeping way. Loads of blood tests - showed nothing. Was still in 40s when symptoms started. Mobility difficulties but could still function.
PHASE 2 - came on overnight after a few years of the above. neck and shoulder hurt very badly - I thought maybe frozen shoulder. One sided at first but became bilateral. Went to physio and osteopath with no result. felt as if I had flu - etc. etc. Eventually could barely function - saw new GP - diagnosed with PMR.
Steroids seemed miracle cure.
Had a few l flares over the last couple of years but have managed them - they felt like a return to phase 1 as detailed above. Now have sudden onset neck and shoulder pain - cannot relate this to an injury. But I doubled my dose for a few days and it did not seem to help at all! At first I thought this meant it couldn't be PMR RETURNING as pred did not seem to help. But now I am wondering if I want that 0-20 effect I had initially - when the pain disappeared practically overnight - should I have gone even higher or for longer?
Thoughts appreciated.
0 likes, 21 replies
Eimmarg greentea26
Posted
does any ones legs just scream in pain im off pred cuz i didnt think it helped and the doc didnt think it was poly mylia rhematica ???? dont know what to do see my rhemy thursday last time i saw him he said wow your hearts amazing and your blood pressure grt reallly im in pain
EileenH Eimmarg
Posted
What DOSE of pred? And did it make any difference at all?
Eimmarg EileenH
Posted
10mg5 morning 5night and no help gor my flair that is still going the first time with pmr i could not lift my arms and was givin 5mg of pred and the next day wow i could lift my arms and all was well then the flair came and 10 mg and no improvement
EileenH Eimmarg
Posted
Pred should be taken as a single dose in the morning, separating it means you aren't achieving a high enough blood level in the morning to combat the inflammation. Also once you allow a flare it may be harder to get things under control. 15mg is the usual starting dose, 10mg rarely works well and if that is what the doctor judges on he may be missing something.
Eimmarg EileenH
Posted
thank you so much for caring and sharing im at my wits end but i will not give up but i want to tears today it is sooooooo hard
EileenH Eimmarg
Posted
You probably really do need a higher dose - and if your doctor won't listen, find another.