At the end of last week my doctor proposed that I stay on 40mg of pred for another few weeks, possibly up until I see the pulmonologist at the end of February.
We discussed this further today.
He's not exactly excited about the idea and neither am I, but we both agreed that it was a question of trade-offs. But this begs the question, what trade-offs made long term use of pred worth the side effects? How bad does asthma really have to be to justify it?
I tried googling for articles, but couldn't really find anything that got beyond the general observation that benefits must outweigh costs (duh). Obviously if one's asthma has a life threatening pattern, then pred side effects clearly take second fiddle to staying alive. But what about when asthma is severe, but not life threatening?
During the last three months I've been on oral pred three times: the first two times were short courses with no taper. Both time, I ended up flaring. This third time we tried to get me off pred with a taper, but that stopped working at about 20mg when peak flow down shifted significantly and again I began flaring.
Flaring for me means moderate to borderline severe attacks that happen every four to seven days with lots of more mild symptoms in between. So far all of these have been turned around with lots of nebs (someimes as frequently as every two hours) and not much more, though I'm usually worse off for several days after.
Also it seems that each time I go through a run of flares, my “best” peak flow seems to drop and never quite rises back to what it was before. Maybe I just keep aggravating inflammation and making it worse?
In our discussion today I tried to propose that since even all that reactivity just really uncomfortable and not life threatening that maybe I could do without the pred. He didn't buy it, saying “you've got to breathe”.
Pred doesn't fix things back to healthy so far, but on the other hand, I'm not very functional at all, if I'm flaring with that regularity. The pred does seem to hold back the level of reactivity so that I can get at least a few things done without having to stop what I'm doing and go home and rest.
Also pred seems to make a big difference in whether ventoline helps and for how long. During the pred free period just before pred trial #3 ventoline basically only made a real difference in symptoms during a small window at the top of the dosage curve (1 to 1.5 hours post neb). Once I went back on pred, within 8 hours or so there was a really noticeable difference: ventolin actually started working again right after I took it and it lasted a lot longer.
So I'm wondering, is long term pred really worth the side effects? Am I buying time now to pay later in the form of bone problems or other side effects?
How do you decide whether the side effects of pred are worth what they accomplish?