I have been on TCZ injections since December2021. I was reducing pred at the rate of 1mg per fortnight, according to rheumy's instructions. I had cautiously gone down to 3.5mg 11 days ago, when I felt a bit sick, had tummy cramps and hot/cold shivers. Lots of muscular pains, but that has been the case for some time. It felt like a mild GI infection, but 3 days later I felt quite ill - 2 sets of deathly fatigue! - bad enough that we had to cancel our first holiday in 3 years!
So I went back up to 5mg for a couple of days, then 4mg ever since. Over the next few days it has gradually felt a bit better. I informed the rheumatology nurses, and they told me to miss last week's TCZ until I got over the mysterious infection.
Early this morning I had a light bulb moment and it occurred to me that it might not be an infection at all, but adrenal gland problems. Looking at the Adrenal Gland section, it seems possible. Do you more experienced people think it likely?
If so, then should I just continue reducing pred, only more slowly, say 0.25mg at a time, or is it actually preferable to do DSNS, from the point of view of getting the adrenals to step up again?
It matters, because if it is adrenal glands and not an infection, then I need to resume the TCZ as well.
It doesn't seem possible to rely on the hospital for managing this, so I'll be very grateful for any advice - thanks.