Connect
← Return to Prednisone withdrawal and Unlikely Additional Symptoms
Discussion
Prednisone withdrawal and Unlikely Additional Symptoms
Polymyalgia Rheumatica (PMR) | Last Active: 1 day ago | Replies (78)Comment receiving replies
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.
Replies to "Hello everyone, I was wondering if anyone has had a similar experience. I have been off..."
@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.
Connect
@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.