what to expect when starting prednisone for PMR

Today is July 16, 2026. I was diagnosed July 14 and started Prednisone 15 mg once daily, the same day. I'd like to understand about other people's experiences to understand what is normal. Pre-medication, my experience was that the start of the day was very painful. Just getting out of bed took quite a long time. Over the course of the day, my body gradually became more comfortable until bedtime. Next day was almost the same pattern, start painful and mobility shaky; by end of day, if not 100% normal, certainly functional. Now with the meds, the mornings are slowly getting more manageable. Getting out of bed is a chore but not the 20 minute exercise it was pre-meds. Yesterday, I felt shaky for much of the morning but by late-morning, mid-day, I was feeling very normal and joined a luncheon with former work colleagues. So I went to bed thinking the next day (today) would be "normal." Instead, it has been the same pattern as the post-med pattern described above. I don't expect a miracle cure but would welcome hearing similar experience so I can adjust my expectations.

Today is July 16, 2026. I was diagnosed July 14 and started Prednisone 15 mg once daily, the same day. I'd like to understand about other people's experiences to understand what is normal. Pre-medication, my experience was that the start of the day was very painful. Just getting out of bed took quite a long time. Over the course of the day, my body gradually became more comfortable until bedtime. Next day was almost the same pattern, start painful and mobility shaky; by end of day, if not 100% normal, certainly functional. Now with the meds, the mornings are slowly getting more manageable. Getting out of bed is a chore but not the 20 minute exercise it was pre-meds. Yesterday, I felt shaky for much of the morning but by late-morning, mid-day, I was feeling very normal and joined a luncheon with former work colleagues. So I went to bed thinking the next day (today) would be "normal." Instead, it has been the same pattern as the post-med pattern described above. I don't expect a miracle cure but would welcome hearing similar experience so I can adjust my expectations.

I am also a new patient of PMR ( I wanted to say victim) I was diagnosed in March and start prednisone at 30 for 3 weeks, then 20 for 3 weeks. tapered more so now at 5mg and still ok. The prednisone was immediate relief from pain that was so bad it was alarming. No pain relievers would help. I was first bad at night and early morning and then lasted longer into the day. In the morning I couldn't lift my coffee to drink--a crisis for me. I had to wait till late afternoon to wash my hair because I couldn't lift my hands above my head. Many daily activities were impacted. Prednisone interrupted my sleep and my mood. At times I would be so angry and then in tears minutes later. Very emotional. I too added Fosomax but now have dental issues and Fosomax limits my options for taking care of my teeth. The various conditions interacting and confusing, frustrating, and hard to accept. I have also gained weight and have a moon face. I have gotten back to exercise but am reluctant to push it. I am afraid of that pain returning. I want to get off prednisone and am trying to stay optimistic that I can do that.

@csimmonds I am replying to my own post. This one is from almost a year ago so it is an update. I stayed on prednisone and tapered as rheumatologist recommended. By May I was at zero but being pain free didn't last long. I was changing doctors so waited to go back on prednisone. Fortunately I was able to see my new rheumatologist the end of June. He was very helpful in understanding where I was and what the future may hold--PMR is so unpredictable. He had me start taking 5mg of prednisone. It wasn't the immediate relief like when I started the first time but that was when I was taking 30mg. The 5mg gave a lot of relief but it took a few days for me to feel normal. I am now tapering every 2 weeks down to 2mg. I will stay on that until my next doctors appointment. So far so good. I do water exercises everyday but am still reluctant to push myself too much. I am confident my rheumatologist will be a good guide as I deal with PMR short term and long term. When I read the experience of others there seems to be no standard for the dosage of prednisone when first diagnosed. I was glad to start high initially but was relieved that when PMR returned I could start with just 5mg of prednisone. Is that the same with most people?

@csimmonds I am replying to my own post. This one is from almost a year ago so it is an update. I stayed on prednisone and tapered as rheumatologist recommended. By May I was at zero but being pain free didn't last long. I was changing doctors so waited to go back on prednisone. Fortunately I was able to see my new rheumatologist the end of June. He was very helpful in understanding where I was and what the future may hold--PMR is so unpredictable. He had me start taking 5mg of prednisone. It wasn't the immediate relief like when I started the first time but that was when I was taking 30mg. The 5mg gave a lot of relief but it took a few days for me to feel normal. I am now tapering every 2 weeks down to 2mg. I will stay on that until my next doctors appointment. So far so good. I do water exercises everyday but am still reluctant to push myself too much. I am confident my rheumatologist will be a good guide as I deal with PMR short term and long term. When I read the experience of others there seems to be no standard for the dosage of prednisone when first diagnosed. I was glad to start high initially but was relieved that when PMR returned I could start with just 5mg of prednisone. Is that the same with most people?

@csimmonds No rules, it is all up to you. No one, MD or not seems to know the path or reasons.L
Yes, love water exercises, also, hot tub. I self tapered with agreement from Dr. so I stayed on a dose until I was pain free for at least 2 weeks.
My go to method is 15 mins of light exercise in bed before getting up. Saved me when I was crippled with PMR early on. Still do them to this day 2 1/2 yrs later. Mostly do them to prove to myself “I’m back!”
Now to address your question, I did not have a time off meds like you. However, I am on the biologic Kevzara and did go off for 2+ months, my blood work came back with increased CRP and SED numbers. DR. had me go back on Kevzara. At no time was I in pain, or discomfort.

@tweetypie13 I appreciate your response and agree, particularly with the patient leading the path. That is what I like about my new rheumatologist. He understands this and listens to my experience. I will be staying on 2mg until our next visit and we will plan from there. The 'we' is important to me. He talked about long term options and mentioned Kevzara but said it could be contraindicated if I had diverticulitis. Recently a scan showed I have a mild case. Since Kevzara can cause bowel perforation it might not be right for me. However GLP-1 might. I have enough other conditions that it is like going down a checklist to see what is ok. Fortunately I am very comfortable with this physician, his knowledge of PMR and his respect for the patient. As you know it is hard to understand the incredible pain with PMR. Even when having a bad time I look ok at 7 in the evening. That morning I might have been crying as I try to get out of bed. Then I dread going to bed. When I was in pain I did some stretching before getting out of bed but it sounds like you do more. What exercises do you do in bed that help? I think many of us could learn from your experience.

@csimmonds I have a functional mobility specialist (trainer) who guides me.
In bed…..(I usually go to the bathroom, grab some water and get back in bed)
Lay on back, for all easy move, DO NOT FORCE BODY. Think of as warm up
Arms lay as goal posts over your head for all exer.
1 knee bent, raise and lower other leg 15, repeat other leg
Both legs bent hip width or more with feet flared out and do windshield wipers, I.e, bend Rt knee to left comfortably, return and bend left knee to Rt repeats-for total of 15 ea side.
Lay on side, move butt back , past shoulders (feels tilted), bend top leg and place knee over lower leg, your top foot will rest on lower leg knee, hold for easy 4 breaths…move will align your body. Repeat with other leg.
Reach your arms straight up to ceiling for 10 ish lifts. (Opens shoulders)
Last…..1 leg straight, other knee bent and pull to chest hold for 30 secs. Repeat other side.
Early on with PMR It was my self imposed goal to some movement, and it’s evolved into the daily warm up for this 80yo body.
Hope it helps and do share any ideas you have

@tweetypie13 Thank you. I understand most of it. Not sure about the middle one but I think I can get it will a bit of trial and error. When I was not on prednisone and pain at its worse I did a couple of simple things before getting out of bed. I did a shoulder and neck stretch and a butt tighten and release. My hip pain isn't really in the hips but lower butt or more delicately put upper thigh. I also use resistance bands for my shoulders and that helps a lot. I am dealing with a body that will be 79 in October so we have that in common. I refuse to give in to PMR.

@csimmonds you goooooo
My exercises are to warm up body so I can move after I get up.
My understanding is PMR is a minimum of 2 yr cycle. Since my 2 yrs I have been pain free, just riding it out. 🤔