Last week I had a severe flare that put me in the hospital. In the afterrmath both my pulmonologist and the hospital wanted me to go down to 30mg after leaving the hospital and then do a fast taper (5mg/week).
My GP's recommendation was to stay at 40mg, make sure things were stable, and then consider going down. However, he was fine when I told him, I'd like to go with the 30mg and try the fast taper if I'm stable after a week.
Well, I'm not so stable. It appears I'm in the early stages of an exacerbation that is getting progressively worse, yet again. I expect when i talk to the GP tomorrow he will want to up the pred to 40mg. At the very least he will likely recommend holding off on the taper to 25mg. Personally, I think if my GP does recommend 40mg, he will be making the right decision.
I'm concerned though because it usually takes a week once an exacerbation starts to get me stable again, so there is a significant liklihood that even if I do up the pred to 40mg, I could end up in A&E again at my wonderful ""no wheeze, no asthma"" local hospital. If I am on 40mg and flare and end up at A&E, I'm concerned they will think I'm just disregarding the hospital advice. this is all the more a problem because the pulmonologist is also on board with the fast taper. He works at the hospital and would be the likely advocate on my behalf against the ""no wheeze, no asthma, so it must be in your head crowd"".
The pulmo is confused because my ABGs didn't show a drop in O2 and because of that is still on the fence about what the diagnosis should be. He knows PF was very, very up and down (ranging up and down from 30% to 90% and back down again tto 50% and then back up again) over the course of only a few hours. I'm fairly sure though that he thinks the blood gases (3 from veings, 1 from artery) were taken at my low points when in fact all of them were taken at points where PF happened to be in the 75-90% of personal best range.
Not upping the pred is likely to make my life suck without any reasonable expectation of stability within a week or so. In the meantime my life is going to be much more difficult. I was feeling REALLY well after the hospital and I so very much don't want to lose it.
First two-three days, I was doing 450 on waking and hitting 480 during the day without help from ventolin at all. This is literally the best I've been in 8 months. In terms of quality of life rather than numbers, this made a BIG difference. The resonance returned to my singing voice (which when healthy has lots of overtones) , my lower notes below middle C returned, and I could sing nearly my full range (3 octives and a fifth out of a normal range of four octaves). No coughing. Exercise easy. Simple tasks like scubbing stoves no longer made me SOB. was able to run multiple errands without getting wiped out. Life was GOOD.
The last four days things have gradually gotten worse: Pre-ventolin PF has dropped to 75% of personal best. Ventolin does make significant improvements, but I can't get to personal best anymore even with ventoline. post-ventolin is now going up to only 450 (94% of personal best) and that only lasts for maybe the first hour or two before it starts falling down to pre-ventolin levels. And each time it drops down, the preventolin level has been going lower and lower.
Needless to say I'm using a lot more ventolin than I was when I left the hospital (3 nebs + 2 incidents of 2 puffs each by 9pm today). I spent most of today resting in bed. I'm coughing again and getting tired easily. I'm back to planning activities around my few good hours, rather than just being able to do things.
Of course, it is always possible tomorrow I'll wake up and start blowing 480 again: Asthma can be fickle that way. But even if I do, the question of whose advice to take remains in force. Even if it isn't an issue tomorrow, it might be in a few days.
If my asthma is going to continue to be this hard to control, I need to have the local hospital and my pulmonologist on my side, so I don't want to alienate them. As I see it, having the hospital and my pulmonologist be responsive is as much 'taking care of myself"" as making sure my quality of life is as good as possible.
I'm finding doctors tend to get on board much more easily if they feel they've been calling the shots and things still don't work. That's hardly surprising: medicine is a high stress career with potentially serious outcomes. The best emotional defense any human being (parent, manager, doctor, other) has in the case of failure to prevent a bad outcome is the realization that they really and truly made the best decision they knew how, even if it later turns out wrong. I don't begrudge them that need if it will help me in the long run.
i would be grateful for any thoughts, feedback, ideas, personal experience about how to negotiate this situation.
Many thanks in advance,