Progress not linear in secondary adrenal insufficiency?

Sorry for your experience. I think many of us get caught in the “yay I am well enough to do something” and totally over do it. A Dr once told me take the amount off energy you think you have and then never use more than 50% of it. It really works .., but is so hard to do!!!!

@terryartist Thank you. Excellent advice. I wound up taking an extra mg of prednisone which my doctor had recommended prior to a trip I planned to take (nope, not going now), but I don’t want to keep increasing. I’m just worried about being so sedentary. I am an older adult and trying to preserve bone and muscle mass.

@potterywoman
I do have good days and bad days 4 months off prednisone but in a different way. I've lost a lot of muscle and hips and thighs are weak and achy. Difficulty with stairs. The last week it borders more on pain and is worse if I sit too long. I don't see my rheumy for a few more weeks. Anyone experience this or have any thoughts? My last markers were normal and I am going to PT. (Dx GCA)

Yes, I am thankful that my high dose prednisone has kept my giant cell arteritis under control; however, my body, including my temples and cheeks swelled to the point of disbelief and became rock hard with knots. I had cushings syndrome and now, adrenal insufficiency. It took me several weeks to get to the point of some understanding
I have four auto immune illnesses, too. I take my titered diwn orednisone in the morning. For several weeks I would have a dreadful tremor, have trouble walking and not think clearly. I have finally had three more normal mornings.

Stopping long-term steroid treatments too quickly can cause adrenal insufficiency. A few weeks ago, I was having a couple painful days then a semi-good day. I was trying to walk close to 2 miles a day but the pain hampered my efforts. I had skin cancer surgery with instructions , "No exercise" I have had a low pain level ever since! Predictable low pain *low energy too) feels great! I am on 8mg prednisone and Kevzara. After stitches come out in less than a week, I will walk 1/8 mile a few days and see how I do then hopefully reduce prednisone by 1mg.

Good luck to you in your recovery. I wound up with SAI because I was never warned about early signs (I was amazed that my doctor actually apologized) and because despite my high inflammatory markers, he had kept me on just 2 mg of prednisone. For my part, I didn't think to mention to him that I was having oral surgery and consequently didn't think to increase my dose in preparation. How do you manage to walk if you have slight lightheadedness? I keep being afraid I will experience a sudden fall in BP as happened a few weeks ago. Consequently, I am hardly getting any exercise, and it is killing me (hopefully not literally!) to be so sedentary.

Early in my pred journey (about 2 weeks) rheum told me to stop - cold turkey. 2 days later I was at GP = PCP for routine bloods, felt fine and then passed out - my BP went through the floor. Nurse wanted to call ambulance. I was lain flat with feet elevated given water to sip and after 2 hours could sit up BP had increased to 100/60 and was discharged. I had a partial recurrence of the fainting over next 24 hours, but since then ok. There had been other errors and I decided to can my private rheum and find a better one. Luckily the nurse at the GP surgery was on the ball.