Unless something really turns around with respect to symptoms it looks like I'm going to be on prednisone at 40mg until the end of February when I see the pulmonologist. My doctor is reluctant to taper because even though I've been at 40mg for the last week, as I keep getting mild or moderate flare ups even on 40mg.
I'm not very happy about this. This seems like a very long time to be on prednisone at such a high dose. If it is really true that we don't taper then except for the 17 day attempt at tapering I'll have been on 40mg for 70 days. It also means that if I do have a serious flare I'll get even more prednisone on top of 40mg - all the more to taper with.
When we tried to taper from 40mg around Chistmastime, we got down to 20mg and then I had a spill that wasn't quite bad enough to go to A&E but still took several hours of nebs every two hours before things got to a point where I wasn't worrying about how long I could last working that hard to breath. (I would have gone if I felt I was really tiring – but I wasn't at that point yet ). That was what put the prednisone back up to 40mg last week.
I was hoping that maybe we would be able to start tapering again tomorrow, but my body just isn't cooperating.
The fact that I'm travelling to the US next week for a two week stay is also a factor in my doctor's reluctance to taper. Maybe a taper isn't such a good idea when I'm away from home, especially since plane flights increase the risk of a cold and hence a flare up? This whole asthma episode kicked off at the end of October when I caught a cold after flying to the US at the end of last October.
I'm trying not to be upset about how long this exacerbation is lasting. I was really hoping that this exacerbation that started in October would be done by now before this trip. So that's disappointing.
I have to buy a travel nebulizer. Two months ago I didn't want to buy a nebulizer because I viewed this situation as temporary and so borrowed one from a local charity that loans out temporary medical equipment. But I can't take it out of the country and even if I could it is too large to travel with.
I've never travelled knowing in advance that I was sick or having to think about what if I need medical care whilst abroad. I grew up in the US and spent the early part of my career there so the system isn't entirely strange, but since then I've either been in the UK or Israel, both of which have nationalized systems that work very differently.
On Sunday I have to go see my doctor (we talked tonight by phone) because he wants to check my oxygenation before I fly. I don't really think it is low nor does he – I have no pattern of that, but even the fact that it has to be considered, leaves me sad. Yet this exacerbation has been going on so long it feels like par for the course.
The trip cannot be cancelled or postponed. The trip itself is likely to be stressful as well although I am very glad it is happening. I will be going to the US to testify as a victim-witness in a trial that has been 17 years in the making and involves a life threatening crime. The prosecutor is hoping to put the defendant behind bars for life. I'm dealing with the emotional stress at this point by being a bit of a dizz-case on top of whatever tiredness and distraction is due to the asthma.
In addition, I had a miscarriage two and a half years ago. Had the child been born this would be around the time of their second birthday.
So I guess I have a lot on my plate: the fact that breathing still isn't easy after a week of rather high pred, a distinct possibility of long term pred use, a trip, a trial, the memory of a loss.