First the deep background, briefly: as a child I suffered occasional mild asthma attacks; these went into almost complete remission during adolescence; in my early twenties the asthma returned in more chronic form, and I also began to be subject to very severe attacks, usually in conjunction with an upper-respiratory infection. Generally the asthma has been admirably controlled by minimal levels of a pair of inhalers, a glucocorticoid and a long-acting bronchodilator, with prednisone for flareups. At some point chronic low-level sinus congestion joined the party. I had a sinus operation 17 or so years ago, but don’t remember much about what difference it made. Later, maybe about 12 years ago, I realized that I had lost my sense of smell. For me, this didn’t involve disorders of taste, so perhaps some messages are getting through to a more primitive part of my brain. A few times in the last few years, when a severe asthma attack has required a heavy course of prednisone, the anosmia has been temporarily reversed, which is quite a trip: it’s like, “Wow! Sunflower seeds! Red wine! There’s a whole world of olfaction out there.”
The sinus congestion has been getting worse, and over the last three years I had taken to self-medicating with a short, tapering course of alternate-day prednisone when it become intolerable. Finally around the beginning of this year I brought this situation to the attention of my HMO, and here begins the saga proper.
I was referred to a head-and-neck surgeon, had a CAT scan, got a diagnosis of nasal polyps, and was referred to a second head-and-neck surgeon at a facility where the CAT scan was of a fancier sort that could be used to guide instruments during a subsequent endoscopic sinus surgery. The protocol at this point was, “Let’s give a strong application of medical treatment (prednisone plus an antibiotic, the latter meant to act as an additional anti-inflammatory agent) and take another scan when that has kicked in.”
The prednisone course in this case was twenty days long: four days each at 40mg, 30mg, 20mg, 10mg, and 5mg. Now I had experienced higher doses than this—80mg and even 100mg—but this was the first time I had started such a course when basically healthy (as opposed to barely able to breathe).
By the fourth day I was in one of the most extraordinary ‘altered states’ I’ve ever experienced: very much like the ‘long, sweet tail’ of an acid trip—about ten hours in, after the really dramatic stuff—a condition of mind saturated with a high degree of clarity, energy, effectiveness, compassion, and gratitude. As under acid, I was not very much inclined to sleep, and seemed to do fine on a few hours a night; as under acid, I tended to drink mostly water and to eat lightly and mindfully. I felt about 25 years old, less than half my real age. The flurry of posting in early February was triggered by this phase.
Gradually, life got back to normal. I suffered through the symptoms long enough for them to take a biopsy of nasal turbinate tissue, then went back on alternate-day prednisone.
The biopsy result provided the final bit of evidence to justify an official diagnosis of EGPA, also known as Churg-Strauss syndrome. So far my “Five Factor Score” (FFS) is zero, meaning that none of the scarier organ-involving manifestations have shown up yet. The baseline treatment for this condition is … prednisone. For a while I had gotten the alternate-day dose down to 12.5mg, but eventually things got bad again, and I am now at 20mg. Long-term prednisone carries the risk of various nasty side effects, but life without it is really not worth living. My rheumatologists seem to want to start me on Imuran, but I am resisting for the moment: the papers I can access suggest that the other immunosuppressives (beyond prednisone) are to be resorted to when the FFS is nonzero, or if the prednisone maintenance dose is too high. Also, there is something of a “better the devil you know (i.e. prednisone)” feeling.