You absolutely need to take stress doses until you have a normal ACTH stim test. My daughter also has adrenal insufficiency and she required hydrocortisone daily for quite a while. About 9-10 months after stopping Pred is when she went to stress doses and stopped the daily hydrocortisone.
You need to take a stress dose when you are sick or under some kind of physical stress - such as a procedure with anesthesia. If you have a fever or a lot of diarrhea, those would also be times to take a stress dose.
My daughter's ACTH was not detectable when she was diagnosed with adrenal insufficiency and her cortisol was 1.1 - very low (6.3 was the lower limit of the range I believe). Once her endocrinologist saw the results and also heard her symptoms (severe fatigue, diarrhea, weakness) she sent us straight to the Emergency Room to make sure M was not in an adrenal crisis and to give her IV hydrocortisone.
An adrenal crisis, as I'm sure you know, can be fatal. It occurs when your adrenal glands cannot make enough cortisol to deal with a physical stress - like an illness, dehydration, severe pain, sedation for a procedure etc.
Usually you will be given tablets to take a stress dose and an injection (IM, not subq) in case you are far away from a hospital. Our endocrinologist says any time you use the injection (for example if you are vomiting and can't keep the pill down), you need to go straight to the ER.
It is very serious - we have had to rush to the hospital more than once because taking an oral stress dose didn't work for my daughter. She was given IV hydrocortisone ASAP.
Adrenal insufficiency can cause a number of vague symptoms - including weakness and pain. I would urge you to contact your endocrinologist or at the very least, ask your GP to test your cortisol and ACTH. If they're very low, typically you will go back onto hydrocortisone and be weaned off VERY slowly.
How long ago did your steroid taper end? Or are you still tapering?
If you do have adrenal insufficiency or even if you have recovered and your adrenal gland function is normal now, you can't really continue to treat your disease solely with steroids. Every time you go back on steroids, it's like taking a few steps back. As long as your body is getting cortisone from an outside source (like taking Prednisone), your adrenal glands will not work and you may end up back on daily hydrocortisone.
That said, I understand that with active disease, sometimes you HAVE to use steroids. But then the endocrinologist should be managing the steroids, not your GI, so that you are tapered off properly, because each time, it's possible your adrenal glands will stop working properly.
What have you tried besides Azathioprine and Remicade? You REALLY need to treat the disease with maintenance meds. What about something like Entyvio (Vedolizumab)? That typically has a lower risk of infection since it works on white blood cells in the gut, so it's gut specific and not as systemic, from what I understand. It typically works better in UC than Crohn's, though it does work for Crohn's colitis sometimes and it is approved for both diseases.
Stelara may also be an option if you have Crohn's Colitis. I don't think it is approved for UC though. But it blocks a different target than anti-TNFs - it's an IL-12 and IL-23 inhibitor.
Simponi or Golimumab is also used for UC - that's similar to Humira but given once a month vs. every 2 weeks.
Try to remember that even if you have had bad reactions to several meds, doesn't mean you'll continue to have them in the future. So even though Remicade caused a lung infection, that does not mean Entyvio or Stelara would - they are different kinds of biologics.
Good luck!!
