What does "burn itself out" mean?

[BigStory]

Greetings fellow pilgrims. My understanding is that PMR is caused by uncontrolled inflamation, and that the lack of control is caused by an inability to produce cortisol. Prednisone counters this.

My question is, If this means my adrenal glands are not functioning properly, how will this ever change as long as I am replacing their activity with prednisone? What does it mean that PMR will "burn itself out"?

My attempts to live on "edge" of an effective prednisone dosage in order to motivate cortisol production run into repeated flares - very painful and discouraging. Am I getting something wrong?

FYI, started at 13mg in 2020, and got down to 7mg by 2022, but back up to 10mg in early 2023 and can't seem to get back to stability. Pain in the wrists and arms is particularly disabling.

[DorsetLady PMRGCAuk volunteer]

Have a read of these links -one about PMR/GCA in general, second on adrenals -and PMR is self limiting so normally goes into remission - in its own time..

healthunlocked.com/pmrgcauk...

healthunlocked.com/pmrgcauk...

[PMRpro Ambassador]

"the lack of control is caused by an inability to produce cortisol."

No - the lack of control is because your immune system is deranged and producing too much of mostly IL-6, a cytokine your body needs to function, but also a couple of other things. It isn't an adrenal problem although for some patients poor adrenal function was identified - it doesn't appear to be the primary problem. It is an autoimmune condition like RA or lupus, where your immune system doesn't recognise body as self as it usually does and starts to attack body tissues as if they were invading foreign bodies.

If it were just cortisol, they would probably use hydrocortisone which is the same as cortisol but its antiinflammatory effect is far less than that of pred and rarely works well for PMR. You need enough pred to manage the symptoms - and eventually it will get down low enough to let the adrenal glands wake up again as they go into hibernation while you are on more than about 8mg pred.

It's a bit like a fire - it will slowly burn down as it runs out of food. Eventually it goes out. As that happens with PMR, the dose of pred you need falls too. But there is absolutely no virtue on trying to manage on too little pred - any left-over inflammation just builds up until you are in the same state you were at first.

13mg is a low dose to start on - did it actually work effectively?

[BigStory in reply to PMRpro]

Thanks PMRpro. Yes, I was able to get fully under control at 13mg, with the occasional breakout flare for bad eating habits or high stress. It was concurrent with a partially torn rotator cuff, which caused a bunch of shoulder pain but is now almost fully healed - although it did lead to some confusion.

[Gimme in reply to PMRpro]

Thanks for that explanation. "deranged" lol What a fabulous word. Just about sums it up!

One question re the fire analogy. What do you consider the fuel to be; the IL-6?

[Gossiplady in reply to PMRpro]

Yes, “deranged” covers it completely! Wonderful!

[BigStory in reply to PMRpro]

PMRpro… just to clarify, the pnly way to find out if the PMR is burning out is to try reducing the dose of prednisone and see what happens? Are there any other clues - not seeing that anywhere…

[DorsetLady PMRGCAuk volunteer in reply to BigStory]

The only true way to know is to get to zero, and have no return of any symptoms whatsoever. And even though you may think it’s gone, you need to give it a few months at zero to really know. 1mg or even 0.5mg can be enough to keep PMR controlled.

[BigStory in reply to DorsetLady]

Thanks DorsetLady, I was hoping not avoid a ollercoaster, even if minimal.

[PMRpro Ambassador in reply to BigStory]

Because really there aren't - get off pred with symptoms returning is it. Whatever any doctor might try to tell you.

[BigStory in reply to PMRpro]

Thank you PMRpro

[Exflex]

Well my take on “burn itself out” refers to the body’s amazing ability to repair itself, given time.