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Any Tips For Tapering Off Prednisone?

Polymyalgia Rheumatica (PMR) | Last Active: May 27 9:17am | Replies (145)

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@pmrnew What everyone needs to keep in mind when tapering is that prednisone, unlike an antibiotic, does not eliminate the cause of PMR. PMR must burn-out in your system on it's own. Once it has burnt out then you are dealing solely with the adrenal gland concerns that come into play when we taper.
If PMR has not burnt out then we deal with the flare of PMR, i.e. the point where the lowered prednisone dose cannot eliminate the PMR pain. In addition we are dealing with the adrenal gland concerns.
In my opinion the "flare" is really mislabeled. It implies that PMR is revving up when in fact the PMR has been there all along. We have simply reached the point where the dose of prednisone we are taking is no longer enough to manage (cover) the PMR pain. Prednisone is not a treatment; it is pain management while you and your doctor wait for your PMR to burn out. The bio-logics are not cures either, they simply manage the PMR pain without the prednisone side effects.
I do not have a Rheumy who stated that in clear English from the beginning and it took me some time to figure it out on my own. Actually, I had to change Rheumy's 2 months in because my first Rheumy stepped back from practicing due to Covid. Neither of them set me down and explained PMR as the beast it is.
If PMR does not burn out in about 2 years, then I believe you should insist that your Rheumy positively eliminate vasculitis as the source of the pain. Vasculitis is a real problem with real world life challenging problems. The management and treatment for vasculitis is much more complex and involves several doctors to oversee their portion of the problem.

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Replies to "@pmrnew What everyone needs to keep in mind when tapering is that prednisone, unlike an antibiotic,..."

@jabrown0407 Indeed, indeed. Thank you for stating this so clearly. Just, after reading this forum, it has been slowly sinking in, in the last week, that PMR is completely different from pain management, as you say. PMR pain is there with a vengeance when I tapered from 2.5 to 1.25MG. Two years, yuck, that is a long time to be on Prednisone. Thank you

@jabrown0407
This is the single best summary of PMR and its treatment that I have ever seen.

You describe the reality of PMR clearly and accurately. I particularly value your analysis of "flares", your description of prednisone as a pain management tool ""not a treatment" and your observation that biologics are also"not cures" but pain management drugs without the side effects of prednisone.

Your post should be placed in a prominent place for all who suffer from PMR.