I certainly feel very prone to extreme fatigue but I also get nights when I have energy and wakefulness ( not very useful at bed time). There have been occasions when I have felt sick and shaky. I always sleep in the afternoons. I will have my Adrenals tested when I get down to 3 mgs Pred - it would be pointless at 5 mgs.
I think I got off lightly because my deathly fatigue only lasted about 3 weeks, from 26-May-23 to 16-Jun-23. I was on steady 3mg Pred per day, and had been for 3 weeks when the deathly fatigue set in. On 5-Jun-23 I started my next taper to 2.5mg thinking "what the heck I'll see if starting the taper nudges my adrenals to wake up." I can't be sure that's what did it, but one day I just suddenly felt my energy lift. I haven't had any more deathly fatigue since. I've continued with my slow tapering and this week I started 1.75 to 1.5 -- onward and downwards trying to be a tortoise not a hare. 🐢
Mine stuttered for about 8 months - during a very slow taper from 6mg down to 3mg which may have helped. Fortunately only had random bouts of fatigue nothing else, and they disappeared once at 3mg….and although I kept Pred at hand for a few months…it was more for GCA relapse than adrenal situation.
It can take up to 12 months after finishing Pred for adrenals to be back to full function.
Having had 3 joint replacement surgeries since then - and no sign of any issues of adrenals struggling have to assume mine are in good condition!
Signs of my adrenal axis starting to work were good hours then more good hours, followed by a good half day. It was very dependent on what was going on in that if I had a day out, when I was able finally, I would feel wiped out at the end and for a day or two. When it was pretty good, I could be tipped into a crisis by an unusual demand like a long journey, sustained high emotion (moving my daughter out), sustained pain, severe Covid etc. My afternoon sleep was a late leaver and morphed into a power nap for a few years. Afternoons were the worst but I have to say that 5pm has always been my low point in the day if I am anything but good all my life, so I wasn’t surprised that low cortisol was worst then.
I have got back to normal now but it has taken me years but it wasn’t bad all that time. I guess this year, the third after stopping, I am now happy not wear my alert bracelet.
I think the biggest indicator for me was a gradual reduction in the intense fatigue. I’ve been steroid free for 5 months. I still get days of fatigue, but they are decreasing and not as intense. Still have good days & bad days, but overall I think my adrenals are coming around and I actually do have a few energetic days thrown in the mix. Feel better and take it one day at a time.
I was worried about that too, but my rheumy wanted me off and I was starting to develop muscle weakness from the prednisone. I do feel much better being off the steroids and so far I’ve been able to manage my pain with Tylenol. I had two episodes that I needed to take 2.5mg of prednisone for two days following yard work activity to help the inflammation. Other than those two episodes, my pain has been manageable.
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