Off Prednisone but still feeling new type of pain

I was on prednisone for 2 years for Interstitial Lung Disease, been off for 10 months and have had it replaced with mycophenolate and am also suffering with debilitating joint pain, shoulders, hands, hips, knees and heels.
My joints are not stiff but are painful all the time. Blood tests and X-rays rule out the usual causes so left with these withdrawal symptoms. Just wake up every morning hoping my body will start to recover.
Restricted on pain relief I can use because of the mycophenolate. Ibuprofen with paracetamol works but is not recommended with this drug although I take it occasionally when I need to do certain things. Perhaps this combination could work for others. I only take the maximum daily allowed dosage of paracetamol.
Tried physio but pain of completing is too much.

Maybe try the Tylenol for arthritis…….it acts differently than the others
I am off prednisone, seem to be good but do take on days of strenuous, hike, bike and golf.

@bat1950 I switched from Prednisone to Hydroxychloroquine after 7 months of PMR. HCL worked very well (as well as the Prednisone). Slowly tapered off of HCL over a year’s time and have been pain free from PMR for two years now. There is no known negative drug interactions between mycophenolate and HCL.

I have been off prednisone e for 3 weeks , I only ever had low dose of 10 mg per day for 4 months , i tapered , now off .
I don’t have any new aches or pains but I have extreme fatigue , my body and in particular legs are heavy and a bit of a chore to walk around but I am able to drive to work , walk around Costco , so I not complaining too much . I have covid reactive arthritis , long covid , severe muscle loss , pulmonary fibrosis etc, rituxan IV 4 months ago . So I am doing way better than before …I can get out of bed and live my life .

Yes…..we are grateful for every little impotent, inches or yards. I am 7 months post prednisone and am honestly now 90%. It’s been 2 yrs since onset. 6 months was my big move forward.
You don’t say how long you’ve been off Pred. Recovery from Adrenal suppression is not quick.

Typo ….. grateful for every little improvement,

Thank you all for your most helpful comments. I have an update.
It’s now been almost 9 months since I’ve been off Prednisone.
As I was explaining with my original post I suffered daily pain in those 9 months. But one day, roughly 2 weeks ago, I suddenly noticed I did not have the same morning pain any more. It’s miraculous! Although I did notice that slowly the pain was getting better each week until one day it was gone!
All I can assume about what helped was strength training to gain my muscle strength back. I have to believe that the pain I was experiencing was DOMS made worse with atrophied muscles from the prednisone.
My suggestion is to get regular deep tissue massages and exercise as much as you can.
Wishing everyone speedy recovery from this horrible condition

@abbeyc

My endurance after I got off prednisone was the same way. It took the better part of a year after I stopped prednisone for the pain and overwhelming fatigue to dissolve. I'm sure PMR was a contributing factor to the pain and fatigue. Technically I still have PMR or at least it is still being treated.

People used to tell me remission was when Prednisone could be stopped without a relapse. I wonder if remission is still being defined in those terms. I have been completely off Prednisone for 5 years. I don't experience any sudden relapses anymore. However, PMR is still being treated as if PMR is still active.

I think what you feel is still PMR, but probably less than in the beginning. I do feel the same things on the same time. I have PMR since juin 2025 but never took prednisone, since I know how difficult it is to get off it. I had a whole lot of pain in the beginning,could not do anything for a few months, was only surviving. Now I feel what you feel, I do a lot of exercices during the day and find it helpful. I expect that with a lot more patience finally the PMR will get away. I try to put my mind on other things.

Yes I have had the same new aches and pains since going off prednisone 7 months ago. PMR gone but in the Morning- legs stiff; upper arms achy; pain after sitting too long. Helps to move more but I take Celebrex and stomach protector every 4-5 days. Seems to help. And leg stretching exercises before getting out of bed. Plus lots of stretches. Helps alot.