The fabulous news is that I am working my way down the steroid ladder at last! I'm down to 10mg a day and should be steroid-free for the first time in more than a year and a half in just a couple of weeks! I was so excited to get off the steroids that it took me completely by surprise when the crazies came back with a vengeance!
After months at high doses, my body got used to the 'roids and I no longer had the running commentaries in my head or the fidgetiness. It never occured to me that decreasing the drug would bring all of this back! Apparently, as the body gets used to a certain level of steroid, taking it away puts you into withdrawals and ALL of the side effects come back! My poor husband. He couldn't understand why I spent most of the weekend with my ipod ear buds in; blasting music drowned out the voices in my head. Boy that sounds crazy...
Along with the crazies came sleeplessness, terrible forgetfulness, moodiness, and munchies. I'm such a delight to live with these days!
In the midst of all of this I try to keep in mind that if this works it will have been worth it. I'll be off the seroids and the Humira will work and then I'll just do the shots for a couple of years to keep the sarcoid in remission. That's my plan and I'm sticking with it!
I'm just a little nervous about oxygen. For the second time, I wore an oxygen meter overnight. My pulmonologist is concerned about sleep apnea and decreased oxygen absorption while I sleep. When I saw him last I explained that I really can't have sleep apnea. I don't have the time or the energy to deal with one more thing, so this last meter will just have to show great oxygen levels :-)
As I've said before, there is nothing all that interesting about sarcoid. It is just one ridiculous thing after another. Thankfully, the steroid crazies do help me see the humor in all of it!
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