Exhaustion

[Paulagcl]

I'm off prednisone entirely now for about 10 days and am exhausted all the time. I guess this is "deathly fatigue?" I tapered super slowly, had been on just 1/2 mg for a few weeks.

[PMRpro Ambassador]

What is "super slowly"? How long did the last 3mg take? How did you feel on 1/2mg?

If it had been me. I would have been at 1/2mg for at least a couple of months, nit weeks.

[Paulagcl in reply to PMRpro]

Well, even my primary care dr, who has gone alone with however I want to do it, felt I should give it a try since I did fine on 1/2 after a couple of days and just a minor energy slump. I have a lot I need to do right now and just came back from a trip so it's been hard to slow down, I think is one problem -- other times I went with the fatigue until it passed. At any rate I still have some pills left (the rheumatologist prescribes them) so I went back to 1/2 today and will see if that helps. . But of course I'm still on Kevzara, though I realize it doesn't cover all the inflammatory issues. Since it was just approved for PMR, I am one of the first patients on it, so he is hoping the drug company will continue to supply it to me. This is one year post-diagnosis and the plan is to keep me on it for another year.

[PMRpro Ambassador in reply to Paulagcl]

And it does nothing for the adrenal issues - you've been on a trip, you have things to do, we would always say, never reduce when the diary is full.

As DL says, 5mg in 5 months is not "superslowly" - super slowly is 2 or 3 months per mg. There are people who took longer from 5mg than it took them to get there from 20mg.

[DorsetLady PMRGCAuk volunteer]

Sorry to disagree, but not “super slowly” at all in my mind…. 5 months ago you were at 5mg… and to many reducing 1mg a month at such low doses is too quickly.

You seem to have been mentioning fatigue for the last 7 months when you were at 7mg..so I doubt you have given your adrenals a chance to get their act together… so no wonder you are exhausted.

[Paulagcl]

Well, I'm sure you're right -- thing is though the exhaustion has usuallyonly lasted for a couple of days and then I had plenty of energy until the next time I lowered it. I'm back to day on 1/2 so will stick with that and see how it goes. Thanks!

[DorsetLady PMRGCAuk volunteer in reply to Paulagcl]

Okay but that was early in at higher doses… and there is heck of a lot of difference between 1, 2 or 3mg and zero…

.. as you are back on 1/2mg - take your time getting to zero… and use a slower taper that takes a couple of months rather than a few weeks..

[Paulagcl in reply to DorsetLady]

Yes, will do. Thanks!