Prednisone withdrawal and Unlikely Additional Symptoms

Hello everyone,

I was wondering if anyone has had a similar experience.

I have been off prednisone for around 20 weeks after taking it for IgA vasculitis. During my treatment I was on doses as high as 50 mg on two separate occasions. Eventually, with the help of the immunosuppressant mycophenolate, I was able to taper down to zero.

Since coming off prednisone, I have been experiencing tender feet, electric shock-like sensations in the soles of my feet, sore ankles, and aching in my lower shins. I also continue to struggle with fatigue.

My doctors have told me that this may be part of the recovery process because my cortisol levels were suppressed for a long time and that my body simply needs time to recalibrate and recover.

I am interested to hear from others who have been through long-term prednisone use and withdrawal. Have you experienced similar symptoms? If so, how long did they last, and was there anything that helped while your body was recovering?

Any experiences or advice would be greatly appreciated.

Thank you.

@jamescrow
I have been off prednisone 5 days. I am so grateful. The fatigue is a real problem and the bottom of my feet hurt though get better as the day goes on. My legs feel like cement. I was on prednisone for 6 months.

@jamescrow After being on Prednisone for 16 months for PMR/GCA, I tapered off in early November 2025. When I first started taking Prednisone, I took 60 mg/day for 6 weeks due to the GCA. I was able to taper off, without a flare, due to Actemra infusions. I will be getting the infusions until at least, early 2027. About a month after I finished my taper, I began having sharp pain in my knee caps, shoulders, wrists and thumbs. Sometimes, I'd awaken at night with stabbing pains in my wrists. Rheumy prescribed celebrex. That didn't work too well, so now I'm on nabumentone. My fingers are stiff and sometimes sore in the mornings. Sometimes, I'm awaken in the night with a severe dull ache in my arms. The other night, it was the right arm. The pain was from the shoulder to my fingers. I'd give it a 7 on the level of pain. It lasted about 10 minutes. These pains were different than my PMR pains. My PMR pains were more in my muscles...these are my joints. I had xrays done on all the aching parts. They didn't show anything that was an obvious issue. Rheumy thinks is osteoarthritis. I never had arthritis issues before PMR. My Ortho PA thinks is autoimmune. I have a lot of faith in her abilities. She's the one who diagnosed my PMR, before I went to my primary. She said I have good spacing between my joints. She referred me to an ortho hand specialist, who I will see this coming week. These pains have been present for 7 months. I hope to get some answers soon.

Each month since being diagnosed with PMR in March this year, I've been on a tapering dose of prednisone, starting the first week on 20mg. Early on, I noticed the top of my left foot felt numb and tingly to the touch and then by late May, started experiencing painful "electric shocks" or sharp stabbing pains. The pain is sharp enough for me to exclaim outloud! Concerned enough to go to my GP about it. He prescribed gabapentin 2x a day. That helps, but doesn't make it go away completely. It's too early in my experience to be of help to you, but I wanted to know I'm experiencing this too. (when brought up to my rheumatologist, she didn't think the prednisone had anything to do with it, but I do!)

@ropnrose
My official pmr diagnosis was Jan 2019 and I started on 20mg prednisone. July of that year I had severe pain in my left forearm wrist area. My PCP ordered xrays and a CBC. I cried in the Drs office it hurt so bad. The next morning she personally called me and said to go to the ER, my WBC count was 25,000. They were looking for an infection somewhere but none to be found. ER determined it was rheumatic and gave me an IV of 60mg medrol and said to see a hematologist. Pain went away, blood count went back to normal and the hematologist could find nothing wrong.
My markers were also elevated.
My xrays did not show much either but 'something' was definitely wrong.
I'm guessing you have regular bloodwork because you're on Actemra. Strange things happen with pmr.

I'm noticing pain during my prednisone tapering especially once I hit 10mg. Some of it I recognize as returning arthritis pain in my knees and ankles that I've had for years, but other pain is probably from slow arthritis progression that I had not noticed was happening. At 25mg prednisone everything felt good but I'm on a fast taper and the jolt of the returning pain (not including my shoulders and hip girdle) is surprising me. Prednisone covered all of this inflammatory pain and I'll have to get used to the non PMR pain that kevzara won't cover.

Many of us having similar experiences.
Over every hill we discover new obstacles. I was told that might happen so I was ready for it.
Please keep sharing.
We’re getting through this.
(There’s no reason not to…)

No you are not. I have had similar issues. Hernia diagnosis, pain where I haven't had before. I have been off prednisone for one week. I pray I don't have to take again or the pmr returns. Still have significant fatigue and brain fog.