When I was told in 2006 that I will need to go on prednisone to treat my pulmonary sarcoidosis, which was all I had at the time, I was hesitant. I researched it and consulted an Ayurvedic practitioner on the drug. Coincidentally, the Ayurvedic practitioner I consulted was also a sarcoidosis specialist and he recommended that I start the prednisone treatment. So I did.
I started out at 60mg a day and was told that I would be on it for a few months at that dose and then I will be tapered off and taken off. I began treatment, and I did get the “prednisone crazies” as I like to refer to the mood swings, as well as the “prednisone hunger”, a horrible hunger that is indescribable, but one that has to satisfied immediately, or someone’s going to die.
After roughly six months, my body seemed to adjust to the side effects and my pulmonologist began tapering off the prednisone, dropping the dose by 10mg every two weeks. I made it down to 10mg and after two weeks he dropped me down to 5mg, and that’s when I fell apart. I felt like whole body was aching, by shortness of breath was worse than before I took the prednisone. After a couple of days at 5mg, I went back up to forty.
Over the years, I went up and down on my prednisone, trying to be weaned from the stuff. In spring of this year, my sarcoidosis specialist decided to taper me off slowly. I made it down to 10mg and he slowly, every two weeks, reduced my dose by 1mg. I made it down to 5mg and everything seemed fine. Then after two weeks, just as he was about to take me down to 4mg, I fell apart again.
I am now back up to 10mg, and on speaking to my pulmonologist, it looks like after being on prednisone for over four years that my adrenals are now so suppressed that they are not kicking back on for them selves.
Now my options are to taper off very slowly, like 1/2 mg every few weeks, or just stay on it to avoid having a flare up. Honestly, trying to come of slowly and keeping my fingers crossed is a chance I am willing to take. If I have another flare up and it is decided that I got to just stay on the prednisone, then at least I know I tried one last time.
Oh prednisone, will we ever be free of our love/hate relationship? I can’t live with you; I can’t live without you.
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