How do you know how much and when to raise prednisone level when you have signs of a flare up?

No this is not what should happen, Julia.  I believe you asked this question on another thread and received information about the slow reduction program many of us follow.  I was wondering how long your doctor let you stay at 15 initially, and did that dose resolve your symptoms?  If your symptoms cleared up within a few days of starting at 15 you should, ideally, have stayed at that level for at least a month to clear out the inflammation as much as possible.  You aren't "cured" the inflammation is being kept in check by pred, but the underlying disease is still active, and may stay that way for a few years.  My particular journey was, I think, fairly typical, in that I was at 15 with no pain at all for five weeks.  At that point my doctor told me to reduce by 1 mg a week.  If at any time in that progress I felt return of the pain I was to stop at that level.  It was this forum which reassured me that I could go back to the level where I last felt comfortable.  So I stopped at 9, went back to 10, waited there a few weeks, and then started (and my doctor gave her approval thank goodness) with the dead slow nearly stop method.  With a couple of hiccups (typically, again, at 7 and 5) I've been successfully reducing and am now at 4 where I feel most of not all of the pred side effects have gone away (not sure about my bones) and even my doctor is happy with me at this level.  It took a year, many might take somewhat longer and stay at the various levels a bit longer than I have done.  What I've noted, since you asked about pain specifically, is that I've a certain tolerance for pmr niggles - in other words, for example, the tops of my thighs might ache a little.  But if that ache got to the point where I had difficulty standing and taking those first couple of steps, I would know my dose is not high enough.   This is what happened when I dropped to 9 a bit too fast, but that incipient flare was easily caught, thanks to this forum.  I note that with each taper I may feel a bit of discomfort, and I now put that down to pred withdrawal because I never feel worse at the end of a taper than I did at the beginning, and mostly I feel better.  There are days at the beginning when I wonder, but so far it's gone well.  The secret it to go very, very slowly.  And especially at around 7 (or some people 8) the adrenal glands will have to start working again and they can be a bit lazy after their pred-induced holiday so it's typical to hit a bump at that point and have to wait while the adrenals catch up.  And, as you'll have gathered, for some reason 10 seems to be a sticking point, and I don't know why, but many of us have to wait around at that level for a while.  I understand it's even part of the protocol for one of the systems used by doctors to tell us to stay at 10 for a whole year. 

Julia,

Luckily, you have found your way to this site, relatively early.

After  2 years, I am still struggling for control, but without those who have experienced similar setbacks, and responded to my naive and frustrated questions, I would be still feeling, much like you do, at this time.

listen to "the experts" ( I'm not one of them)and learn to adjust to a new way of handling the way you deal with life in your new body.

For me, it's an ongoing, learning experience.....of trial & error.

Wishing you well.

barb

 

Thank you,

The support and advise I have received is amazing.

Working on acceptance, I sure it will come.

Hope you are well.