Jennifer I too have been on hydrocortisone since they found out it was my adrenals. I have been tested for autoimmune adrenal individuum (Addison's) but have been told it's central or "secondary" due to steroid use according to labs. I am currently on 10mg HC 2x/day because I can't get any lower. Each time I tried I'd have an adrenal reaction and it would cause me to flare. I haven't ever gone to the hospital for steroids, just increased at home orally, double or triple dosages as needed with illness etc. I'd love to hear your experiences.

That is my only option also with my disease. Luckily right now I'm not flaring but they won't discuss it anyway until I'm done breastfeeding. They'd like me to do that for at least the first year. She's 8 months now. So we'll see what happens because we're under a lot of stress financially. I have heard good things about Benlysta too... But I'm also leery because it does suppress your immune system and with steroids and the mtx I tried I was always sick.

They want to get me started on Benlysta, but won't be till next month at some point. I've heard good things, however.

Yes April they never helped me either :/ I just got stuck on them.

Ugh I'm so sorry! I'm not trying to be insensitive regarding anything or anyone...a state of anger I suppose. I hate steroids and may need to take them again myself :-( I just know that they have effected me negatively over so many many years, and the last time I was on them they didn't really help. It can all be overwhelmingly frustrating...must stay positive.