Sometime within month 1 or 2 of ceasing topical steroids (from the first flares through the many months that follow) your body becomes unable to consistently regulate its temperature.
Case in point:
I stopped using steroids in May of 2012 and by the first week of June I was wearing layers of clothes under a fleece robe while laying on the couch with a blanket or two and cranked the heat up to 78 degrees (Fahrenheit). Of course it’s June right, so my poor husband would drive his hour commute home from the heat of Silicone Valley “over-the-hill” to Santa Cruz to the dry sauna in our house. I felt so bad for him, but he was a trooper.
It was strange because my skin was on fire, but my bones were frozen. Sometimes different parts of me would be totally different temps, like my neck would be extremely hot and my nose would be an icicle.
I finished my 9th month last week and realized, as I went to adjust my thermostat, I have been keeping the house between 68-70 degrees. Plus I’m only in cotton “stretchy” pants, a tank, long sleeves and sometimes a sweatshirt – no socks! I do admit to still using a small blanket in the evenings while lounging. But I can’t keep the house any warmer than 70 degrees or I feel to warm.
Trust me, I still have hot flashes but the freezing cold to the bone feeling is no more.
Exciting times!
eczemancipated 