Any side effects after going off prednisone slowly?

@gilbert56
You're right! While on prednisone I was so jazzed up I stuck with decaf. Now with caffeine back in my life I find it boosts my attitude. Badly needed I might add.

Ohh so that butt aching is a real thing? My daughter just tells me my glutes are weak. I just need to exercise to strengthen them. I figured it was just me being lazy. She means well but folks who don’t know about PMR & prednisone sometimes don’t help!! So this forum is so beneficial.
I’m turning 73 in a few weeks. Started this trip taking prednisone end of March 2025 (adding methotrexate end of May 2025) & at 2 mg prednisone. Next week the alternating lowering to 1.5/2 going very slowly now !
Thanks to all who continue sharing their experiences as it’s really helped me understand what’s going on (Rheumy not much help in that dept) with my body!

Prednisone relieves all the aches and pains of inflammation, no matter what is the cause. I'm tapering down and once I dipped under 10mg I'm feeling all the arthritic pain that prednisone alleviated. I just have to get used to it again.

@gilbert56
Sorry to hear that. I'm 3 months off prednisone and still have all of what you describe with hip, walking and stairs. Even my hand feel stiff and achy. I see this especially after I've been sitting for a while. It's not serious pain but does interfere with mobility. My rheumatologist last week said this was not PMR but the after effects of long term prednisone. A blessing a d a curse. I find light exercise and stretching helps. And prayers, too. Good luck with your rheumatologist

@kare1 I weened off prednisolone from December 2024, to May 2025. I did good going down slowly from 20mg to 0mg in that time period. Shortly after not taking any steroids, the aches and joint pains came on very strong, even in my buttocks. I did some Googling and found that there is something called Gluteal Tendinopathy. I think that is what is causing my buttocks and left hip to ache. My right hip has been replaced. The steoids weaken the gluteal tendons. They are attached to the hip from the buttocks. The ache goes down to my knee. Extra Strength Tylenol is a big help. There are recommended exercises to improve this problem. I feel that this ache is lessoning, as I am now off the steroids for 6 weeks. I am having an overall improvement in my discomfort. I read that all of this discomfort is actually do to Steroid Withdrawal and can take a good amount of time for the body to readjust without steroids. Google "Gluteal Tendinopathy" for more info.

Thanks to everyone for sharing their journey. I am in tapering now. My initial dose of prednisone was 15 and now am at 7 mg. I am finding it hard. Big swings in emotion, a very sore back and flank which is new, fluid retention ,,, trembling and hand cramping that makes me clumsy. I am so hoping that there is some relief coming soon. I love hearing the success stories found hete!

@terryartist 7mg seems to be where people have problems. Don’t know how long you have been on it. Your adrenals may need to kick in. Try Tylenol for ARTHRITIS as a supplement. And or talk to your dr.

@terryartist My dr. said ill always be on some prednisone..have been on some for 28 or so years now.....im going to talk to dr. again soon...im 77 in a few days and on orencia infusion.. really helps me .... once a month along with daily 5 mg pred.im some what stable...which is nice..i really want off pred but we are all different...physical.therapy has helped me strengthen... i say be mindful of your mind... we are all unique ... best wishes

@ruralgal76
If you're on prednisone because of your cortisol after years of adrenal suppression, you can always discuss switching from prednisone to hydrocortisone with your doctor. According to both my rheumatologist and hematologist oncologist, 5mg prednisone is an insignificant dose except for the adrenal factor.