Posted 8/7/2018 5:16 PM (GMT 0)
Prednisone is synthetic cortisol. While you are on high dosages of pred (above 12-mgs) then your body ceases producing cortisol and your adrenal system goes to sleep. As you taper below 12-mgs, your body should resume producing cortisol. Your body's normal cortisol levels are about 12-mgs equivalent of prednisone. So if you're at 10-mgs of prednisone, then your body's adrenal system should be producing 2-mgs of cortisol. If you're at 10-mgs of prednisone and your body isn't producing any cortisol then you experience withdrawal symptoms.
What's typical withdrawal symptoms? If you look at cortisol's natural purposes then there are your withdrawal symptoms:
1.) Cortisol regulates the sleep/awake cycle: cortisol is highest in concentration in the early morning when you wakeup, and lowest before bed and while you sleep. With withdrawal you'd experience fatigue.
2.) Cortisol is a mild anti-inflammatory that takes care of mild aches and pains that we'd otherwise experience. Withdrawal also can involve mild body aches and pains (muscles, joints, or just general aching).
It's common to feel temporary withdrawal (3-4 days) after dropping your pred dosage, while your adrenals notice that change and get used to producing the new deficit. When you're off of pred entirely, then you might take from a few weeks to a month or so to be fully free of all withdrawal. If you're 1.5 to 2-months post-pred and still experiencing withdrawal then it is unlikely your adrenals will naturally wake up, and I'd strongly encourage you to see an endocrinologist-specialist.
Endocrinologists say (1) you should never experience any withdrawal if a pred taper is done correctly and (2) most gasteroenteroligists are clueless with prednisone tapers.
It's highly unlikely that your adrenals are shot, and you'd need pred for life. What is likely, in the event of prolonged withdrawal, is that the taper was done incorrectly and too fast. An endocrinologist would test your blood to measure your current cortisol levels, and come up with a plan to get your hormones back to normal levels. They'll usually put you on hydrocortisone (a shorter-lived steroid then pred) and do a slower, more controlled and measured taper to ensure your adrenals awaken and are producing normal levels of cortisone.
If you're 1-year into prednisone then you might need 1-mg pills of pred, and do 1-mg drops at the tail end. Slower is much, much better with longterm pred usage. And going up and down dosage, as you describe, is exactly what you should be doing. Might need smaller pills though (or cut your 2.5mg pills in half if you are able to, and use 1/2 pills)!