I was diagnosed with Undifferentiated Connective Tissue Disease, Sjogrens and Insterstitial Lung Disease last April, and started on hydroxychloroquine and 20mg prednisilone daily.
I began reducing the prednisilone dose in August, and since the beginning of December have been down to 7mg daily.
However, during the tapering period, I developed symptoms of severe fatigue, weakness and sleepiness, together with episodes of sweating/hot flushes, shaking and nausea. There is a distinct daily pattern, with the mornings least problematic, and the symptoms increasing as the day goes on. I am sometimes woken at night and my sleep is very poor.
I wondered if my symptoms are due to adrenal insufficiency induced by the prednisilone. However, I've had a TSH (2.84, range 0.30 - 4.40) and T3 (cant find the numbers for this, sorry) and free T4 (16.1, range 9.0 - 19.1) and cortisol (126 at 16.20hrs , expected levels 138-635 at 9am, <318 at midnight), which I am told were "normal" and in October, my rheumatologist said that these symptoms are not connected to either the auto-immune disorder or the steroids. He advised continuing the prednisilone taper.
The symptoms have not eased, and are now so debilitating that I am effectively housebound. I am at a loss as to what to do, but have a review with my rheumatologist next week.
Do these symptoms ring any bells with anyone here? Have you any advice for my forthcoming appointment?