Polymyalgia - diagnosed about 18 months ago, taking pednisone for one year.

[kevinmcpuck]

After being off the pednisone for a month the pain and stiffness has returned. I wondering if this is polymyalgia or something else since I don't have all of the symptomes.

[SheffieldJane]

PMR lasts over 5 years on average. Some people are lucky and go into remission in a couple of years. It looks to me as if you may have come off Prednisone too quickly and the inflammation is beginning to build up again. The aim is to find a dose that you are comfortable at for the duration. With your doctors advice I think it would be advisable to go back to about 10 mgs until it settles and very gradually taper down until you find a relatively symptom free dose.

[kevinmcpuck in reply to SheffieldJane]

Thanks, I will try the 10mg. Everyone continues to tell me how prednisone is bad for me ....stop taking it??

[PMRpro Ambassador in reply to kevinmcpuck]

PMR isn't really too good for you either!!

[DorsetLady PMRGCAuk volunteer in reply to kevinmcpuck]

“Everyone continues to tell me how prednisone is bad for me ....stop taking it??” ...

they are probably lucky enough not to need it. Would they tell you to stop taking heart or cancer medication...which in their own ways are bad for you?

Until you walk in somebody else’s shoes - you can’t tell them what to do!

[kevinmcpuck in reply to DorsetLady]

Good point, thanks

[HeronNS in reply to kevinmcpuck]

I'm one of the people PMRpro refers to who need a very small dose. I've tried zero and it isn't enough, but PMR seems completely in check at 1 or 2 mg, although other aches and pains, notably osteoarthritis, aren't helped at that vanishingly small dose. At that level I don't believe there can possibly be any adverse side effects. You too may do well on a very small dose, just take your time getting there from the higher dose you need to get the flare under control. My doctor actually told me when I got to 3 mg that she was happy with me there, but I was able to continue tapering a further mg. I've been between 1-2 for about three years now, it took me two years to get from start at 15 to 2 mg, but I was at 3 mg by end of first year - so we are all different! Trust your body's signals.

[DorsetLady PMRGCAuk volunteer]

For the reasons quoted by SJ, PMR is resurfacing - it never went away - it was obviously quite well controlled on lower doses - but since stopping Pred, the inflammation has been allowed to build up again.

Catch it quick, and you may only need lower doses to get it back under control.

[kevinmcpuck in reply to DorsetLady]

Thank you

[PMRpro Ambassador]

It isn;t uncommon for people to find that 1mg is enough to keep the symptoms at bay - but at zero there is enough disease activity to build up slowly until symptoms start to appear. Leave it long enough and more symptoms are likely to reappear.

Only 1 in 5 patients is able to get off pred in under a year, 1 in 3 by 2 years. It is a chronic illness. Prof Dasgupta tells us he likes to keep patients at 2-3mg long term as it reduces the risk of relapses and is such a low dose it isn't a problem.

You may well find that with quick action, going back to 5mg for a few weeks may be plenty to get it under control and then you might get back to 1 or 2mg quickly and easily. Leave it and you run the risk of ending back where you started.

[kevinmcpuck in reply to PMRpro]

Thank you