What happens when its gone?: 66 yrs old, male, PMR... - PMRGCAuk

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What happens when its gone?

rick518 profile image
6 Replies

66 yrs old, male, PMR since May 2018, 6.5mg Pred, no symptoms except fatigue in the afternoon.

Theoretically, if the PMR has gone into remission or just plain gone without my knowing it, if that's possible, how quickly can I reduce the Prednisone to nothing?

And how will I know it's gone while still taking Prednisone?

Thanks in advance

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rick518 profile image
rick518
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6 Replies
piglette profile image
piglette

You won't actually know your PMR has gone until you get down to zero and have no PMR symptoms. The fatigue may be your adrenal glands. They reckon they can take up to a year after stopping pred to become fully functional again.

PMRpro profile image
PMRproAmbassador

The only proof it is gone is getting to zero and the symptoms not returning. No other way because as long as you are on enough pred the symptoms aren't there and the blood markers should remain in normal range. You are well under 2 years - only 1 in 3 patients get off pred in 2 years. For half it takes up to just under 6 years.

You can't reduce too quickly now - you have to allow your adrenal function to get going again and that doesn't happen overnight. So you continue reducing steadily as you have been and see if symptoms return. If they don't you will get to zero, if they do you will have found the lowest dose that manages the inflammation - which is the dose just above where the symptoms appeared again.

The fatigue now could be the PMR still being active or it could be your adrenal glands not being up to snuff. You can't tell - so you keep reducing slowly.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

As others have said, the only certain way to know if in remission, it to get to zero remain there for a few months - and no return of symptoms.

At less than 2 years I would suggest it us, at the moment, just well controlled by the dose of Pred you’re on.

Adrenals may be reason for fatigue, so for2 reasons -

to get them working again, and

to avoid overshooting your optimum Pred level - keep reducing slowly.

SheffieldJane profile image
SheffieldJane

As above, good luck rick518!

Captainjonny profile image
Captainjonny

I was glad to read this question and the responses. I've had PMR for about the same time ... after a few ups-and-downs, I'm now at 2/2.5mg with only slight hip stiffness (and not much fatigue at all). Recent CRP result was in normal range but as mentioned above and by my urologist this might be the result of the steroid use rather than me "really" getting back to normal. I'll continue with the ever-so-slow reduction method and see what happens. Patience was never my strong point - but people on this forum have helped me see its value! Good luck.

rick518 profile image
rick518

Thanks All- no easy way out of this although I have to admit I did take homeopathy from a homeopath and it has removed the few niggly PMR symptoms I was getting off and on. I am now on a lower Pred dose because of that...time will tell....

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