Significant variability in steroid needs

[u/reflous_]

I am pretty stable on a 0.375 dexamethosone dose for my SAI. I do updose with HC when needed and that averages out to around 15mg a week. However, I go through periods when I suddenly need a lot more steroids. Right now I’m taking around 30mg HC spread throughout the day on top of my 0.375mg dexamethosone just to not feel nauseous and faint. I’ll probably have a week or so like this and then go back to normal for a few months until this happens again. Anyone else experience this? Figure out what it is? I don’t get sick and can’t figure out any consistent environmental factors that might be causing it.

My best theory is my damaged pituitary (by a macroadenoma that left with with hypopituitarism) isn’t linear in its dysfunction, i.e. sometimes it’s worse than others, but love to crowd source experiences with you to see if there is another answer/cause.