Prednisone withdrawal and Unlikely Additional Symptoms

70 year old next month. I will not go into symptoms that caused me to be originally diagnosed with PMR but began my treatment with 20mg about 15 months ago. I am now down to 2 and 1 mg’s daily. I did notice that I was unusually fatigued throughout the day and actually made comment to wife that I felt like I needed a nap right after I woke. And I sleep pretty well. After about two weeks I AI’d it and found that this fatigue is actually one of the side effects of the Adrenal gland waking up among a few others. Also some stiffness in hips first thing in morning but comes and goes through out the day. For me personally I am still able to walk 2 to 4 miles a day and play golf so the soreness /stiffness is acceptable to be off the prednisone. I would say though that new pains in areas, especially if they are debilitating could be PMR, but as I have learned on my own journey and reading many posts on this site, PMR is different for everyone and though we see doctors it is us in control of our body’s. One thing my rheumatologist does check when I see her every 6 months or so is for rheumatoid arthritis due to some issues with hands and fingers. So far so good.

I had anticipated with maybe too much joy getting off prednisone soon and am down to 2mg recently but some of my symptoms and the way I feel have me considering going back to 3 mg for relief (sore and weak hips, arthritic shoulders in morning), and trying to start 2 mg again in a month, but I don’t see how things would be different in a month. When I completely get off prednisone is there a period of weird aches and pains to expect or other adjustment to expect?

I am in the same boat as y'all. Stayed at 3mg for many months. Got to 2.5mg but was a struggle. Now trying to get to 2 mg. Really stiff after sitting for awhile esp in the car, trouble up and down stairs, fatigue, on and on.

@boo3
How does your Rheumatologist check for RA? My PCP did a blood test which was negative but my joints in my hands are quite large and painful. Plus other joints are painful. I have been unable to get into a Rheumatologist as of yet.

@betsyhase My Rheumatologist didn’t test, my primary care physician did and my numbers for then3 tests were so high he diagnosed and prescribed the initial script and it was after seeing my rheumatologist about 3/4 weeks later and discussion she chose not to test again as the initial bloodwork was current. I have not had any other bloodwork as of yet and will not until I am off prednisone. My choice as I am weaning off prednisone and unless we have issues both agree that not necessary

@betsyhase
If there are rheumatologists near you, perhaps you could try getting an appt with a PA - physician assistant if available. It worked for me and was very helpful til I saw a Dr..
It is possible to have seronegative RA.
I'd be curious to read a radiologist's report of your hand x-rays.

@betsyhase The first time I mentioned to her that my hand actually left one and wrist felt tight with pain and one finger feels almost like the middle joint catches on itself when bending and is misshapen a bit she did a physical exam. When I questioned if she thought it could be rheumatoid arthritis she told me no and I did question why? First my indicators didn’t point to that and because I was on a higher dose of prednisone (which is one of the medicines to treat RA) at the time she felt that it was not RA. Also just to be clear I also have sore/stiff hips in the morning and sometimes feel stiff and/or weak when standing up or getting out of car, but nothing like how I felt when I first developed PMR. I do not want to be on prednisone or any drug that can do as much harm to your body as good, any longer than necessary. At 70 I expect some aches, pains, and stiffness and as long as I am able to still exercise, walk a few miles a day, and other activities I am ok with those pains. Know your body and remember to be your own best advocate

@boo3
Thank you for your feedback. I have had so many issues with knees, hips, then shoulders and hands that disguise my PMR. Then when finally tested, it showed up. I have lost so much strength from inactivity I am lucky to get out of the house for appointments. I am slowly building strength but it is slow progress.
I am 73 now and I have pain throughout my lower extremities that we can't figure out how much is PMR or ?
Maybe RA? All I know is that I am in pain 24/7 .
Very frustrating but I am thankful for this group to air my frustrations and get helpful suggestions.

@betsyhase I also have some stiffness and pain in hips when waking or sitting staying in one position for a longer time. When I first started with the pains in shoulders and hips, I was unable to get up off couch or chair with out struggles and then stood wavering for a second or two before I attempted to walk. Also if I put my coffee cup into microwave to heat struggled to raise arms to put in and take out. I do measure my progress with and without prednisone by these struggles. At this time my doctor had my shoulders and hips X-ray’d and some arthritis was found in one side. But pain was too extreme to be causing the immobility and quality of life change so he did blood work and that’s where the markers were found to be really high. Anyway as I move forward I accept the stiffness and pain as long as I am able to do what I did before the PMR. I am just blessed that my pain and stiffness allows for that acceptance

Hello all. Thank you for taking the time to relate your experience, it has helped me hugely. Mostly to realize that the experiences are so super different for different people.
I was diagnosed 1st week January 2026 with PMR, but refused Prednisone until March 20 when I could no longer walk to bedroom. Aggressively starting at 30MG for a week, with tapering 5MG each week. Stayed at 10MG 12 days due to traveling. Now day 4 at 5MG. From all the reading here, will now slow down the tapering. The prednisone removed ALL pain within 1-2 hours after 1st dose. I also realize how lucky I am to have a shorter journey than many of you.
Doubt it made any difference but I fasted February for health and to get ahead of bloating/weight gain. Thank you for sharing and hope this helps someone else to feel positive. I am female, 6 months short of medicare, very little exercise in last 4 months but working out upper body with theraband and lower with lunges.