Any side effects after going off prednisone slowly?

Hi Pam. LOL. Thanks for slipping in some humor about feeling like superwoman. A little laughter now and then is good medicine. I remember my first few days on 20mg. It started off great. I could lift my arms and pain was gone in 5hrs. About a week on 20mg I went from superman to exacerbation of hx of anxiety disorder. Doc put me down to 15mg. Didn't work. Put me right back on 20mg. was there for a month and a half. Then weaning after that went relatively smooth. What a ride. After a while, I think to some extent we all get to know how our body is going to handle the Prednisone along with the nasty detox effects. I'm 71 and realize most of us have had to make lifestyle changes. Had to downsize my woodcraft/ craft show activities. Too physically strenuous. One thing I found out with the prednisone is that it's masking any and all pain associated with my L-4 L-5 lower back injury. Not a peep since I've been on Prednisone. Big warning for me when I put the superman cape on. Wish you the best.

I am doing well. I have limited, random soreness here and there, rt upper arm, left wrist etc, but it does not seem to last very long and does not interfere with anything. I am now a bit of a hypochondriac in that I notice everything. I wish I knew if such random things occurred before. I think not and hopefully it will dissipate over time. But I am full on preparing for Thanksgiving dinner at my house and delighted I can with no physical limitations. Off 1 week now. Happy Thanksgiving to all.

Hi I am so so happy that you are doing well !!! Happy Thanksgiving to you and your family and everyone else!!! my very best wishes!!! I am taking one day at a time.

Steroids scare me. Years and years ago while on them for ruptured disc I had a day of insanity -
Laughing inappropriately then bawling while watching a comedy - crazy stuff. I haven’t taken them for anything since until this.

I don't remember any symptoms after tapering for 16 months. My CRP and Sedrate were normal.

I WAS ON PREDNISONE FOR TWO YEARS started at 15 mg AND AM OFF NOW 6 WEEKS.
Very stiff fingers and pain on one hand and so so pain on other hand' this subsides during the day.; fatigue,
every day need to rest by afternoon. Difficult getting in and out of my car and standing after sitting for some time; subsides after walking a bit or should I say waddling a bit; also a general "not well" feeling .
Blood tests are ok and cortisol in normal range. I am 74 years , I do try to exercise 3 times a week...
anyone else have the same experience? When will this pass...? will we every feel well?

I feel for you! I, too, am 74, started 20mg Prednisone in May 2024. I slowly tapered to .5mg last month. Within a week or so, I realized my legs had that heavy cement like feeling and I just didn’t feel well. Labs were normal. I’ve been back on 5mg now for 3 weeks and will soon try another taper.

@eby I am 80yo…..2 1/2 yr journey with PMR, hoping to get off Kevzara “soon”.
Question, were you pain free when you stopped PRED?
That’s my key, to be pain free for a couple of weeks before tapper or stop.

As a supplement, I take Tylenol for ARTHRITIS, as directed , and it has been a savior before heavy exercise, or humidity.
In addition, assuming your cortisol/adrenals are fully recovered……what are you doing? Being laid up for so long is hard to bounce back. PMR has brought out the family osteoarthritis that was under the surface.

As I say, DON’T RUSH it to fall back again. (I tried and it did not work for me)

@eby I was Prednisone for 1.5 years. I ended 6 weeks ago. My blood work is very good. I was doing pretty good but then all the aches and pains started and they are not PMR pains. I have a lot lower back pain and hip pain and sometime buttocks pain. I have read that ending steroids is followed by steroid withdrawal symptoms and it can take a long time for those symptoms to disappear. Here is what I read... "Prednisone can significantly impact the gluteal muscles and hips through steroid myopathy (muscle wasting) and avascular necrosis (AVN) (bone cell death in the hip joint). These side effects generally present as progressive weakness, difficulty rising from chairs, and deep groin or hip pain. The gluteal (buttock) and thigh muscles are often the first and most severely affected proximal muscles". Google your symptoms clarifying end of steroid use.

@eby
My experience being off prednisone is very similar to yours. I was on for 1 year for GCA starting at 60 mg. Have been off for 3 months. Not exactly pain but stiffness that limits mobility. I also have difficulty getting in and out of cars, getting up after sitting too long and generally feel weak. My doctor tells me this will go away and patience is key. I guess I'm too anxious to get my life back! MD also said the higher the dose and the length of time on prednisone, the longer it takes. The thing is, while on prednisone I was doing aerobics alternating with weights, determined to keep what muscle I had. Felt no pain then!

Keep the faith that we will eventually feel like ourselves again.