I've been posting on the LupusUK site for a while, but have what seems to be related to my response to prednisolone. It is so severe that I am now housebound, so I would love to hear from anyone with ideas, thoughts or experiences that might be relevant.
I was diagnosed with MCTD 2 years ago and began on 20mg prednisolone (and hydroxychloroquine). After several months, I began to taper down to 12 mg, and at this point, began to experience severe daily episodes of shaking, nausea, flushing and sweating. I quickly became very fatigued. Despite hospitalisation, no cause was found and I was advised to continue reducing pred. I did so over the next year or so, gradually reaching 4mg about 8 months ago.
During this period, my fatigue and weakness continued, and although the episodes of sweating etc eventually eased, they still recurred on minimal effort e.g. as little as walking round the block.
I suspected an adrenal problem, but was dismissed by my rheumy until I did a home test kit which showed low levels of cortisol on waking, and "subclinical" hypothyroidism. A synacthen test last month week showed that I indeed have adrenal insufficiency.
Here's the problem, though. My endocrinologist has said that the extreme fatigue and sweating episodes are a bit strange, as with a 4mg pred dose, my cortisol supplementation seems about right. He suggested trying to add just 1mg pred in case my symptoms are due to under-medication.
I did that last week - only to find the sweat/shake/nausea episodes returning immediately and with full force. Despite returning to 4mg the next day, I have been struggling even to get out of bed since.
Any idea about what on earth is going on? Or what should I do?