How do you tell if an exacerbation is improving?

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.

4 Replies

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  • Oh Beth, you could almost have titled this thread 'How can you make brittle asthma behave itself like normal asthma?' From my own experience Id say the only way is by doing what youre doing - keeping detailed records of both PF and symptoms and looking for patterns.

    Im going to be starting a slow pred taper hopefully Tuesday and we are going to be basing it on symptoms, PF and ENO. Obviously until it starts I cant predict how it will go, but I will be on weekly cons appointments so carefully monitored.

  • Oh Beth, you could almost have titled this thread 'How can you make brittle asthma behave itself like normal asthma?' From my own experience Id say the only way is by doing what youre doing - keeping detailed records of both PF and symptoms and looking for patterns.

    Thanks for the feedback. When this all started, it made total sense to me to keep records but my previous GP and my hopefully former pulmonologist seemed completely indifferent to my efforts. Admittedly, that is part of the reason I decided to change. I simply don't see how anyone can manage asthma - particularly the kind of asthma that is so up and down - relying solely on a 15minute snapshot. But from time to time I wonder if somehow I got it wrong in an Alice-in-Wonderland-Mad-Hatter's-Tea-Party sort of way.

    I think my new GP is much more open to creative solutions, but I'm not sure how to communicate how good or bad things are to him. A snapshot like above is good for illustrating the problem, but its too bulky to be a regular form of communication. But I also am struggling with what details are the most important. Perhaps that is part of what you mean by patterns? Pay attention to the what seems most significant in terms of my being able to live my life? (Gut feel is that the lows have to go). Perhaps that becomes the key metric? Or perhaps the key metric is the things that are most likely to predict an on-coming intensification of symptoms? (Not at all sure what that is). Or both?

    Your sub-cut trial underscores the problem. Sometimes the lows can be fixed but not the highs or vice versa. So does the data I've collected so far. I've got a portion of my records in a spreadsheet so that I can generate graphs and calculate statistics. The highs, lows, and intraday variation all have different correlation coefficients. They must be driven by different things. It tells me control is not monolithic.

    (yes, seriously geeky - but the tech part is something I can do in my sleep so not a big deal).

    Im going to be starting a slow pred taper hopefully Tuesday and we are going to be basing it on symptoms, PF and ENO. Obviously until it starts I cant predict how it w6ill go, but I will be on weekly cons appointments so carefully monitored.

    I hope you'll keep me/us posted on how it goes.

  • I wonder whether a tick chart or similar would help? Like a list of symptoms (tightness, cough, breathlessness etc) so the drs can see at a glance rather than ploughing through notes? Im only thinking aloud, I need to decide on a way for myself and am thinking this might be a way to do it. Luckily I have a cons who does listen, and after being in so long this time they have a better idea of how my asthma behaves (misbehaves!).

  • Please continue to think aloud! It would be great if this could turn into a brainstorming thread.

    I just talked to my doctor about what to do next. I ended up telling him a summery of that day I described above. It made the point well that it was hard to describe progress. I could tell it got through because half way through my narration he stopped me and summarized ""its very unpredictable"". Decision with pred was to either stay at 40mg or try to go down no more than to 35mg and stay there if there is no increase in symptoms.

    So I guess it is a case of the right information for the right time. Part of the challenge for me is learning which is needed when. There is a need for metrics so one time period/treatment outcome can be compared to the next. But sometimes a story is the very thing that is needed after all.

    As for the pred, I've been thinking though: today I've had another spontaneous jump into the green zone. I had forgotten what a big difference being able to breathe well makes. I've been mildly SOB walking at an amble the last few weeks when I go to the supermarket. A few days ago I got overtaken by a man in his 60's who had the physique of your average desk jockey. (I don't have a car and have been walking nearly everywhere I go for the last 20 years). Today I was walking at my normal run-walk pace and wasn't SOB at all. Perhaps it would be worth staying a little longer on 40mg to see if this solidifies into my actually spending most or all of the day in the green zone. (am I dreaming? is this possible?)

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