“You may have to fight a battle more than once to win it” – Margaret Thatcher
This is my fifth or sixth attempt of coming off of prednisone and again it failed miserably. I started weaning off in November and had pain that was tolerable, and in the middle of February I decreased the dose again and then last week the muscle pain in my arms was at the point where it was painful to just pick up my iPhone. As a chef, it made it torture to pick up a heavy pot or pan. In any case I was determined to push through the pain and endure because I knew that this too shall pass. The other symptom I was experiencing was my sometimes erratic heart rates.
However, on Thursday I went with my wife to the supermarket and I grabbed a cart and began shopping while she browsed the plant section and I could feel my whole chest tighten and my bronchial squeezing shut. I didn’t have my oxygen concentrator with me, well frankly because I have a shitty memory and keep forgetting to grab it on my way out and on a subconscious level I think that when I use it I am giving into this damned disease. I know, it’s a dumb thing to do and I need to get over it and just use my oxygen more. As my pulmonologist keeps telling me, of all the medications that I take, my oxygen is the most important.
I started to feel a little dizzy and when I looked at my hands they were blue from lack of oxygen. I finished up the shopping slowly (yes, I am a stubborn ass) and then found my wife, told her I needed to go and the car, and left her to cash out for us.
Pain I can handle and work through but when the lungs start to close up and I start to turn blue, I know it is time to admit defeat, so I called my doctor and he told me to immediately up the dosage of prednisone back to 10mg (no surprise there) and come see him right away. Again, I am a stubborn ass and told him that I would come in on Monday (today) because I was too far away on Thursday, and Friday was a snow storm. Plus I wanted the prednisone to kick in for a couple of days before I see him and he has a panic attack. I would say that I am very blessed in that all of my doctors are very caring and really take a vested interest in me.
Later I will go in for my appointment and I know the routine that he will again tell me that it looks like I am not able to ever come off of this demon drug, that my adrenals are not kicking back in to make my own prednisone, but I need to get off of this drug. I really, really do.
So I will wait until fall when summer work stress has passed and try one more time. I don’t know which approach we will try tis time, as it seems we tried them all.