So I've been trying (#4) to taper the prednisone. At the beginning of the month after I got out of the hospital I felt really good by any measure: peak flow, energy level, cough gone, etc. etc. but by day six things started going backwards and with some minor noise have gone down down down. I'm now hanging between 60-75% of personal best with a few short periods up to 90% immediately after using ventolin.
Three weeks on pred < 35mg and I'm back now to where I was before the hospital: tired, coughing, easily out of breath, hurting to breathe from time to time, fighting off hyperventilation that isn't coming from overtly breathing fast but rather from my body trying to overcompensate for whatever is going on inside, sometimes having to stop what I'm doing because breathing becomes an activity in its own right, peak flow jumping up and down along with the now its hard to breath, now it isn't game.
I feel caught between a rock and a hard place. I feel like Tantulus grabbing for the fruit and it spinning out of reach
Because I spent a good part of yesterday between 60-70% of personal best, I decided it was time to get a second opinion about continuing the taper. My regular GP is on vacation for another two weeks, so I saw another doctor at the practice who sometimes fills in when my GP isn't available. He was helpful in some ways and not in others.
Helpful: he was fine with my continuing the taper.
Not helpful: He gave me no clue as to how to decide when it was no longer safe or when it was at least time to seek another opinion. I can tough out a lot - I managed to tough out 45 minutes with peak flow in the 30-50% range. I don't know how far to take it, but he didn't have anything to say. Maybe I do need to wait until O2 stats drop - but if so, how long and how low. And how would I know anyway? I don't have a pulse oximeter at home? And even if I did, isn't that essentially saying that I shouldn't seek help unless I'm basically on my way to respiratory arrest? Somehow that can't be right.
Or maybe he thinks I'll just stay at 60-70% of personal best for the next two weeks? Chugging along on and off unable to function but in no serious danger? Maybe it is true. We've never taken things this far before without upping the pred when it gets this bad.
helpul or maybe not: He was willing to up the pred if I could no longer tolerate the current symptom level, but I was the one who didn't want that. If I up the pred, I have to start the taper all over again. At 35mg and 5mg/week that's another 6 weeks. But more than that, there is no guarantee that anything will be different with the next taper.
If I stay at a low dose then I can't function properly. I'm spending way too much time managing breathing or being tired than I am trying to live my life. On the other hand, unless it is proven that I'm partially steroid resistant and less likely to have side effects, then long term pred at 35mg isn't a solution either. At 35mg and up I can maintain progress. Anytime we try to go below, I just get worse and worse. It doesn't matter if we taper fast or slow: 5 days, 2 weeks, 4 weeks, 1 week per 5mg pred - it is all the same. I can't maintain healthiness.
The only other option in his mind was intravenous steroids, but he didn't want to do that unless my 02 stats had dropped or he could hear a wheeze for himself. I had different reasons for thinking it wasn't really necessary. (a) regardless of the presence or absence of wheezing, I agree that I'm managing well, even if I'm uncomfortable and tired (b) it would probably get me back up to close to personal best but without also upping the prednisone to 35mg as well, I won't be able to maintain the progress. And that takes us back to the problem with solution #1. It is a temporary fix.
Helpful: The part where he was helpful was when he recommended that I force a change in strategy. I think this hit the nail on the head and was much more useful than attempts to wish away the problem by throwing things over the psychological fence.
He suggested that I change the discussion to (a) either confirm I'm steroid resistance and can safely be on 35mg as a maintenance dose or if I'm not steroid resistant force a discussion about the long term because of how disruptive symptoms are when I'm on low doses of steroids.. or (b) focus on how I'm supposed to live my life given that my asthma (or whatever else one wants to label this) cannot be controlled without high doses of steroids.
I think he is right. I don't know if this is going to work. The pulmo has been pretty through in ruling out things, but so far has resisted focusing on understanding how I'm responding (or not) to steroids. He's still caught up in the ""is it asthma or is it not"" game. Yet we've gone down the list of asthma look alikes and nothing has panned out: Meanwhile it is very clear that steroids DO make a big difference but that they have to be at high enough doses that long term use is potentially dangerous unless I am steroid resistant and somewhat immune to the usual side effects.
The idea that I would have to live forever the way I feel today sound frightening. Life forever at this level would mean I would have to give up singing. I'm not sure how I would work. i'd be sick too often to hold a job and have on and off trouble concentrating on the days I was well enough.
Its one thing toughing something out for a few weeks so that we can have a test result. it is another thing entirely to live a half life, regularly ill from uncontrolled asthma. For *me* to make reasonable choices about trade-offs (long term steroid side effects vs. current quality of life) I need to know where I really stand as regards steroids.
Thank you for listening to my rant.