Diagnosed in early November; struggling with flares so I am presently alternating between 17 and 16mg prednisone. Blood tests this week (Sed rate and C-reactive) came back normal. Is that odd?
I have a first appointment with rheumatologist on Monday next week.
Thanks for advice.
Hello, wondering why you are doing the alternate day changes rather than say 0.5mg for a bit then the full 1mg. For some the switching back and forth is a bit too much if your body likes stability.
What are these recent flares feeling like? Is the pain connected to anything you are doing or experiencing at over the last couple of months?
No great reason for the alternate day plan except I saw that strategy on the "DL Simple Tapers (Word)" chart from HealthUnlocked! I haven't been able to correlate the flares with activity (I golf and ride a bike) but they DID seem connected to meaningful attempts (e.g., 2.5mg) to reduce dosage.
It’s ok for some but for others like me it sent me into a permanent state of Pred withdrawal. Perhaps you do need a slow taper in small jumps to find your sweet spot more accurately.
Watch the activity because Pred and PMR make the muscles less happy with strain, especially repetitive strain. If you are getting delayed onset muscle pain from that it can muddy the water and make things feel worse.
Markers can lag behind symptoms or not react at all.
Not actually alternate in the way some use…but bloods are apt to lag behind symptoms. But if you are flaring , you need to get that under control - and not be reducing.
Isn’t the slow tapering designed to alternate?
There are different ones.
The alternate one is - old dose one day/new dose one day throughout the whole month.
The DSNS and mine introduce the lower dose differently. Starting with one day new dose initially and building up more days as the weeks go by. So that at the end of the month you have graduated from old dose to new dose.
With the alternate one you are in the same position on days 1 & 2 than you are on days 27 & 28.
Are you sure the problems were flares relating to too little pred or your body objecting to a change in dose?
A bit more info about where you started and how you have tried to taper would help us help you.
Started at 30mg; 3 weeks later was at 15 and had a relapse; went back to 17.5 and tapered to 12.5 at 6 weeks (this is because my NP thought I should be at 10mg after one month!) when I started flaring. Back to 17.5 and then 20 and I have been trying to gradually reduce since. Was at 14mg 2 weeks ago but had to go back up to where I am now. Started 17mg on February 3rd. I know I'm doing this wrong but was trying to comply with the NP's instructions!
Not your fault - but a great pity your NP hadn’t carried out a bit more investigation into PMR. He is expecting too much, too soon.
Personal opinion -back to 20mg for a couple of weeks - and then reduce 1mg a time (preferably every 3-4 weeks) if you can persuade NP that is!
THANK you very much, DorsetLady. I appreciate your advice.
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