Off Prednisone but still feeling new type of pain

@kjoed53 thanks so much that’s refreshing to hear that you have experienced this as well. It’s an amazing drug but like anything once you come off the drug 😱😱 I’ve also got BMS Burning Mouth Syndrome too

Yes this is my life. I have been off of prednisone for about six months and absolutely everything-knees, hands, feet, neck, thighs, upper arms have pain. In the morning I take Meloxicam and .25 mg prebagalin. In the evening the same. I am better throughout the day, but it all returns in the evening.

Quality of life is terrible and I never thought at age 63 I would feel this way.

If you find out what else happens after remission of PMR, let me know. My doctor has no idea either except to say arthritis.

@kjoed53 Have you tried Physical Therapy> It helps me

Yes 10 years ago (first bout) after all meds over with I had a new pain in the next with turned out to be stenosis. Unfortunately, when you’re on prednisone for a year or more, your body goes on aging, but you just don’t know it. Until of course, no more prednisone and then you start feeling the aches and pains of age.Getting old is golden!

Well I feel like this group deserves an update. Since my original post in Dec 2025 I feel like a new person. As I reread my post I can’t believe this was me and only 10 months ago. feels like another life time. I am so much better now. I am off all PMR and RA drugs. In January I went aggressive with working out at the gym. Of course , I started slowly at first. My muscle were extremely depleted from 4 years of prednisone so I had to slowly rebuild my strength. During my PMR days I was always doing some type of physical activity, mostly walking, pilates and yoga to stay in shape so this may have helped too. But now my workout capabilities are back to where I was pre-PMR. Lifting weights, spin cycle classes. My physique had changed significantly from the steroid destruction so I was determined to get my old body back. . I made physical fitness my daily priority. I changed my diet to mostly whole foods focused on protein intake goals to help my muscles. I eat very little sugar so I sadly pass on all desserts. I take a lot of supplements too.
One other thing I did do was have my hormone levels retested and then the HRT meds were adjusted upwards( I was taking HRT for osteoporosis). . Maybe this also helped???
Anyway I am very happy with where I am at now and hope I never have to repeat this awful period in my past. I hope everyone can get here

Prednisone masks a variety of pain from a variety of sources. When the steroid goes away, those pains return and in some cases new pains appear. After tapering off prednisone (thanks to Kevzara) I rediscovered my old friend osteoarthritis in my hips and my knees, which of course I had forgotten, and in addition I was diagnosed with spinal stenosis, which was new (and for which I received successful MILD surgery). Life after prednisone is better than life on prednisone but we all have to address each source of pain on its own terms. Alas.

@istraz34
I had 5 weeks of PT at $35 copay per session and the only thing it did was make me poor. I've been searching for an aqua tai chi class, but haven't found one close to me yet.

@kjoed53 Very helpful insight, thanks!

@kjoed53 Sorry to hear that. The dr prescribed me PT and let me go to whichever therapist I wanted. They even gave me exercises to do. I did pay extra $20 per session but was worth it.

@istraz34
I was given exercises to do in between sessions but unfortunately nothing worked. I know it works for many people so I guess I'm the outlier. Lucky me...lol