The 5mg Threshold

Posted by superfly999 @superfly999, 1 day ago

Diagnosed in October 2025 and started at 15mg Predinsone.

Rheumy took me down by 2.5mg per month, and all was good until I reached 5mg. PMR symptoms returned immediately, but different that what I experienced pre-diagnosis. Instead of extreme pain in my shoulder joints and extreme stiffness throughout my posterior chain and in my neck and shoulders, I got morning stiffness in my fingers and wrists, and sometimes in my big toes -- like arthritis where I never had it before.

Rheumy jacked me back up to 10mg, which quieted all my symptoms. After a month, down to 7.5mg -- all good. Another month, 5mg and, after 2 full weeks this time -- no symptoms.

I do not want to celebrate prematurely, but I am hoping my PMR has burnt itself out. Last time I got to 5mg, symptoms immediately returned. This time at 5mg, no symptoms at all, and I am at almost exactly 1 year out from initial symptoms and 10 months out from diagnosis/Prednisone.

In addition -- and I know this is extremely subjective -- I just "feel" better. Like, normal. Like, before PMR. Less fatigued, less depressed, just -- normal.

I hope I'm one of the lucky ones for whom PMR burns out after only a year.

Next inflammation labs are in two weeks and, if normal again, I'm anxious to see if my Rheumy drops me another 2.5mg or switches to the more gradual .1mg reduction to minimize withdrawal symptoms as my adrenals "wake up" and begin producing Cortisol again.

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.

I just hit 3.5 mg and all hell broke loose. I was at my rheumatologist yesterday and if necessary he said go back up .5 but if I can last a little longer, it might start to get better. I sure hope so. Second time I’ve had PMR in 10 years. But I remember 10 years ago I had a fight with the last 3 to 4 mg that finally got there.

REPLY

I went down very gradually. There are 1 mg tabs available to work with.

REPLY
Profile picture for seniormed @seniormed

I went down very gradually. There are 1 mg tabs available to work with.

Jump to this post

@seniormed How gradually? 1mg per month?

Did you experience any of the typical Prednisone withdrawal symptoms?

REPLY

I went down from 5 decreased by I mg every 2 weeks.
I also took 25 mg DHEA and was on Mediterranean diet.

REPLY

I would suggest that if you have no symptoms after a month at 5 mg to go slowly on the taper. This a small part of a 2019 Australian study called Management of Polymialgia Rheumatica in older people by Jessica L. Leone and others.
…..Once thought to be a benign and self-limiting condi-
tion treatable with a finite course of prednisolone,
mounting evidence now points to the need for pro-
tracted therapy in many PMR patients. The median
duration of corticosteroid treatment for PMR is
1.93 years, with a median cumulative prednisolone dose
of 5400 mg.15,16 Up to 60% of patients remain on corti-
costeroids beyond two years.17,18 This is predominantly
attributable to the frequency of relapses, which occur in
30% 50% patients during the first 12 18 months of ther-
apy, usually within two weeks of reducing steroids.5,19
Relapses necessitate return to the last dose of steroids at
which symptoms were controlled, followed by a repeat
weaning attempt after 1 2 months. Patients are typically
able to wean prednisolone to a daily dose of approxi-
mately 5 mg, but commonly have difficulty achieving
lower doses without a return of symptoms.18,20 Con-
cerningly, one in four patients will require >4 years of
corticosteroid therapy.15 Even after cessation of

REPLY
Please sign in or register to post a reply.