By now, it should be apparent that no genre of music–classic, holiday or otherwise–is immune from parody once I take keyboard in hand. This one’s a bit of a stretch, though, so stick with me here. When last I shared the most recent details of my multiple medical misfortunes, I had just returned from the NIH clinical trial in Bethesda and was preparing for a battery of childhood immunizations to replace those erased courtesy of the transplant process.
I’m happy to report that those seven shots did cover most of the old standards like hepatitis B, polio, diptheria, tetanus and pertussis, and therefore I should be able to go about my business confidently in the coming years, secure in the knowledge that no matter where my travels take me, I am protected from whooping cough and lockjaw.
I did find the measles/mumps/rubella vaccine conspicuous by its absence, but as it turns out I will need to get booster versions of all the aforementioned vaccines at the end of January, and yet again in November 2014, at which time they will apparently toss in the MMR vaccine as well. Those of you with young children have no doubt run this gauntlet in the recent past, but given how long its been since I was classified as an infant, it just seems like a heckuva lot of needles in a very short period of time.
I’ll now dispense with my trypanophobic whinings and move on to the part where I try to make some sense out of this posting’s title. I have not touched on the subject of corticosteroids in some time, so why not take this opportunity to somehow employ them to pervert one of our most treasured holiday carols? As most of you are aware from my earlier missives, the only practical and effective way to restrain and control the symptoms of chronic graft vs. host disease (cGVHD) is to administer a whopping dose of prednisone, and then hope that the symptoms don’t return once the dose is tapered off.
Since prednisone is not a cure for cGVHD, it comes down to a “cross your fingers” scenario that said symptoms remain at bay; otherwise one must immediately revert to the original dose (in my case, 80mg/day, or 1mg/kg of body weight) as soon as the taper is completed.
Now, this taper thing is kind of tricky. Turns out that the body’s adrenal glands–in addition to cranking out adrenalin on request–manufacture approximately 5mg of their own “prednisone” in the form of cortisol, a similar glucocorticoid. Since this paltry 5mg dose is dwarfed by the 80mg I’ve been ingesting from last December through May of this year, and again from August through the present, my body, as would anyone’s, shut down its own internal cortisol production during that first steroid regimen, and closed up shop again this time around, reasoning that there’s little point in cranking out a meagre 5mg when the body is being flooded with 80mg each and every day.
That’s all well and fine, but if one were to abruptly halt the prednisone regimen–a tempting prospect given the myriad of side effects that accompany such a high dose–the adrenal glands are not capable of returning to their own steroid production levels without some advance notice; rather, they need to be eased into their pre-prednisone production levels gradually. Otherwise, the adrenals might never awaken, and therefore be incapable of producing their own cortisol as well as other stress response hormones.
In fact, the adrenals are at some risk of being permanently compromised whenever a whole bunch of steroids are introduced. Hence, the rationale for tapering even the briefest regimen of prednisone. For cGVHD patients and others who are on relatively massive doses, the taper typically takes place over the course of a few months–80mg/day to 70mg/day for a week or two, then 70mg to 60mg for a few more weeks, and so on until the dose is finally reduced to zero.
There is, however, another approach to this tapering process; namely, the alternate-day method, wherein the actual tapering begins much sooner than with the standard protocol, but instead of dropping from 80mg to 70mg every day, the dose decreases to 70mg every other day, and then moves fairly quickly down to 0mg on that alternate day only.
So when one arrives at the 80mg on day one/0mg on day two point, the dose is already tapered down to 40mg when you do the math. The side effects are potentially minimized as well, although I’m still waiting for my chipmunk cheeks and calcium-challenged spinal column to avail themselves of this alleged respite. In any case, this alternate day option seems like it could be a winner for those who dream of a corticosteroid-free existence. There is a potential downside to this method, of course, that being the “roller coaster” effect one is subject to when zig-zagging between 80mg and 0mg doses over the course of 24 hrs.
I lobbied my docs for the alternate-day taper this time around, and for me, while the ups and downs are certainly noticeable, I have not found them to be unmanageable. The 80mg days find me juiced up and somewhat manic, while the “zero days” are characterized by a relatively normal feeling in the AM, followed by what can best be described as “running out of gas” by the early afternoon. Next day, it’s back to 80mg in the AM and the cycle begins again.
For now, it’s worth it to have the opportunity to get off the prednisone as quickly as possible and to know that I’m already down to 40mg/day. Coincidentally enough, my first “zero day” was Tuesday, Dec. 3rd, which dovetails perfectly with this blog posting, because if you are inclined to do just a little more math you will discover that the twelfth zero day of my taper just happens to fall on Christmas Day.
So let’s bring this posting full circle by setting the taper to music. I’ll jump right to day twelve to save electrons–and also to give you more time to read my second post of the day. I’ve found this to be surprisingly melodic, but please, folks, don’t feel that you absolutely must sing it out loud–it works just as well if you hum the tune and just read the lyrics to yourself. On the other hand, if there are others present in the room while you are reading this, why not all join in and give it full voice?
The more perceptive viewers among you may feel compelled to point out that precisely six zero days are included in my hastily-revised lyrics, as opposed to the twelve promised by virtue of this post’s title. In my defense, I opted to employ a not-inconsiderable degree of artistic license in order to maintain your interest through the entire stanza.
And now, without further ado:
The Twelve Zero Days of Christmas (Day 12)
On the twelfth day of Christmas
My docs prescribed to me
A normal dose of eighty
Zero on the next day
Then right back to eighty
Followed up by zero
Once again, take eighty
Drop back down to zero
Eighty, then revert to
And a whopping dose
Of zero milligrams
Next: The Gift of the Mac Guy