You'd think the answer to this is obvious, but for me it isn't. Over the course of a day my PF and symptoms can be all over the place. I'm trying to decide what to tell my doctor when we discuss how my current exacerbation is progressing and when and how to go down on the pred.
What I want to do is suggest to my doctor that we set some goal for stability or improvement and use that to decide when we do the next step down on pred rather than a simple ""X days, down 5mg"" taper. I've tried the ""X days, down 5mg"" taper so many times in the nine months and I *always* end up back at 40mg eventually.
Have you tried such a goal based tapering strategy? If so, how did it work for you?
Do you wait to get a day entirely in the green zone? (I haven't managed that since the beginning of May!!!!). Do you go by the best times? The worst times? Do you have some way of telling when good times are more often than bad times? What if a good day is followed by a bad day? How many good days in a row do you have to have before you decide an improvement is stable?
Just to get an idea of how up and down I can be, two days ago I had a few hours with some of the best breathing I've done in weeks. But I also had a lot of not so good parts. The day looked liked this:
* woke early feeling mild difficulty breathing - PF was just below 30%
* after a neb PF leaped from 140 to 410... then crashed an hour and a half later back down to 140. I was trying to get out of the house for some errands and was mildly SOB simply getting dressed and packing up my backpack. But after resting I felt much better and went out the door.
* I was feeling so good that I walked all the way downtown instead of taking the bus (about 50 minutes) and had no problems, no difficulty breathing and was feeling VERY happy.
* But alas.... my first errand was at a government office with a lot of people waiting outside smoking until the building opened after lunch. I tried to keep my distance but the smoke got to me anyway, so 4 puffs over the course of two hours to calm things down.
* When I got home I was so knackered I ended up sleeping for about 5 hours.
* THEN spontaneously without any ventolin after resting, my lungs decided to do the happy dance. It felt easy to breathe. PF was the highest of the day (430=90% personal best) and in fact the highest in 2 months!!! I went out to a cafe and spent the evening with my laptop and a cup of coffee and had only gone down to 80% PB when I went to bed. That is probably the longest time I've stayed above 80% in several weeks.
* I go to bed, but an hour later I'm up again because PF has dropped back down to below 30% and stayed low all night and was down to 100 before I finally gave in and did a neb at 7 the next morning.
Many thanks in advance for sharing your thoughts and experiences.