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Unbelievable. I had to check to see if I wrote this! I've got the same thing and been trying to sort it out for weeks. Do you think they will go away when I'm off steroid but still on Actemra infusions? I've noticed that if I do something like try to move a mattress they get worse. How do Rheumatologists not know this?? I am amazed by the lack of knowledge of doctors who specialize in an area, whether it is this area or another. I keep telling them they should check these groups, that would open their eyes!!
I will be off Methylprednisolone in 6 days and will keep up the Actemra infusions. I have good levels but just get so exhausted. I can do something, but then drag around like a zombie for 3 days. No one can say if that's the Actemra or the PMR. I felt better a year ago!
Replies to "Unbelievable. I had to check to see if I wrote this! I've got the same thing..."
"I will be off Methylprednisolone in 6 days and will keep up the Actemra infusions. I have good levels but just get so exhausted. I can do something, but then drag around like a zombie for 3 days. No one can say if that's the Actemra or the PMR. I felt better a year ago!"
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Whenever I read about fatigue being described like this ... I immediately think it might be related to a low cortisol level. It seems to happen when people are at low doses of Prednisone while trying to taper off.
It has been shown that cortisol levels should increase with moderate amounts of exercise. The adrenals are suppressed by long term prednisone use. I wonder if adrenal suppression is responsible for excessive fatigue and slow recovery times after exercise??
I recall feeling the same way when my cortisol levels were low. After my adrenal function improved so that more cortisol was being produced ... I could exercise longer and recover faster after exercise.
https://www.rupahealth.com/post/exercise-cortisol-how-exercise-affects-your-stress-hormone
My exercise tolerance didn't improve as soon as I tapered off Prednisone. It did improve with time as I exercised more. Also, my adrenals were capable of producing more cortisol with time after I tapered off Prednisone.
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These groups help, because I think I would lose my mind talking to my Drs I wish they would look at these chat groups.