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Conflict with Rheumatologist over taking Prednisone for PMR in AM/PM
I was diagnosed with PMR 4 weeks ago and when I first started I was taking Prednisone at various times of the day and what I discovered was that it worked perfectly for me when I took it in the evening a few hours before bedtime. If I took the same dose in the AM instead, I would wake up with pain and stiffness that I would not have ,had I taken in at night. The rub is my doctor is trying desperately for me to take all in the AM or split dosage in AM and PM. It’s frustrating when my body is telling me smaller PM dosages work perfectly. WHY SO MUCH PUSH BACK? Does anyone else take it at night?
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@kjoed53 You do realize there is no real PMR Exit ramp. It is chronic and the best there you can find is a Remission Ramp. All autoimmune problems are chronic - no exit ramp for any of the known autoimmune problems.
@jabrown0407
There's an exit ramp for prednisone and the current PMR flare, with the hope that it doesn't return. Some are lucky and some are not, but then again I don't believe that PMR is one single disorder. It's more like a group of similar disorders. That's why we have similar but different symptoms, similar but different prednisone doses and similar but different outcomes. Maybe I'm wrong but there's no surefire test for PMR so it's a diagnosis of exclusion. That's cause for thought.
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2 Reactions@kjoed53 Totally agree and have stated it and restated it in this forum multiple times myself. Some people are never able to get off prednisone - some people on here have been under treatment for 10 years and more. I'm pushing 8 myself. I can taper down to zero, all is fine - labs good and I feel good. Then within 90 days I am having a flare. Very frustrating. Tried Tyenne biologic had adverse reaction, back to just steroids for now. I wish you success in your efforts. One and done!
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1 Reaction@jabrown0407
Thanks, I have SMM in addition to the PMR so I have no option but get off the prednisone, at least long enough to get a true picture of my SMM with clean blood work and probably a 2nd bone marrow biopsy.
@kjoed53 I was told the same thing you said. For some, PMR is a one and done, typically disappearing after a potential couple years.
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@eparnold0219
Those are the people no longer posting...lol
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1 ReactionDuring various intervals of 1-2 weeks apart I’ve tried taking prednisone 10 mg in the am, then a split dose of 5mg am and 5mg pm and finally the whole 10 mg at night and I DEFINITELY found that the whole dose in the evening works best for me!!! Since it doesn’t bother my sleep….one of the main reason the evening dosing is discouraged …. I have continued the evening routine and have great relief…you know your body so I say ..take it the way it works best for you!
I too question …if your natural cortisol level is highest in the morning then why is that time of day the worst for PMR!?
@pbk128
My PMR symptoms didn't subside during the day and were actually worse at night, but the pain was never tolerable until I went on 25mg prednisone. The initial dose of 15mg was too low and barely dulled the pain. My rheumatologist was adamantly opposed to splitting the dose but was willing to listen if I wanted to try it at night. The main reason for not taking it at night like you said is sleep disruption. Fortunately, the morning dose worked for me. Unfortunately, I was subsequently diagnosed with SMM too. My rheumatologist caught that in my blood work and referred me to a hematologist oncologist for further evaluation. From my understanding, it's not uncommon to have PMR and something else going on too.