Off Prednisone but still feeling new type of pain

@dadcue yes I went off prednisone in May2025 and the onchologist assumed I had Addrenal insufficiency but the cortisol tests proved otherwise. I was very slow and careful with my Prednisone taper to avoid adrenal issues.

I was diagnosed in May. The basic pain areas for PMR. Now I’m down to 3mg pred and the mornings are awful!
Pain is different than original but just as terrible. Hands, rotator cuff area, neck and hamstrings especially after a walk.
My rheumatologist said to split the 3mg to 1.5 morning and night . He first thought it was a PMR flare up but my numbers are low and have been stable for months, now thinks it could be something underlying that the pred affected!
I guess I’m looking for suggestions as to what you all are doing when you experience this painful stuff. I’m 72, was working out 5-6 days a week with walking 5 miles a day 5-6 days a week. Now I’m basically just walking and very little weighs. I’ve incorporated Tylenol arthritis not sure it’s even helping. Any info will be greatly appreciated.

@mezack25 Hopefully splitting the dose will help you, but if it doesn't it seems like you might have dropped too low to keep your PMR under control. I have read that up to 20 percent of people have normal blood markers initially or during flares. You might be one of those people.
Also, 8 or 9 months of treatment isn't very long for PMR. A lot of people need 2 years or longer before their PMR burns itself out. If you drop too low on prednisone, you might be hurting for for a long time before the PMR ends. I was sick with PMR for about a year before being diagnosed, so I know what that's like. I tried treating it with Tylenol for arthritis, and that didn't help much.

I had rotator cuff problems in one shoulder plus a lot of stiffness in my neck when I had undiagnosed PMR. I had tight muscles for a while when I was tapering prednisone, so your hamstring issues could be from the prednisone.

If you keep having a lot of pain, you could ask the rheumatologist about going up a little on the prednisone and seeing if that helps.

Did you have much pain when the prednisone dose was higher, like at 5 or 7 mg?

@jeff97
Thanks for responding Jeff. I didn’t feel so much pain when I was on 5. I think it might have started when I dropped to 4. I think I’ll give the split dose a shot for a week or so. If not I may request, as much as I hate to, go up to 5 again. Thanks again for your input. So glad for this group.

@mezack25
I agree with a Jeff…on everything.
I also see too fast taper. I was told not more than 10%, stay at that dose until pain free at least a week.
Doing a daily journal of pain level, meds, and exercise was most helpful.
I am 79 yo female and also exercise at your level. I could not achieve that for a long time. I found pushing the exercise while in pain, did not give my body a chance to relax and recuperate with the PMR. Try less impactful like pool walking & exercises.

I was diagnosed in May. The basic pain areas for PMR. Now I’m down to 3mg pred and the mornings are awful!
Pain is different than original but just as terrible. Hands, rotator cuff area, neck and hamstrings especially after a walk.
My rheumatologist said to split the 3mg to 1.5 morning and night . He first thought it was a PMR flare up but my numbers are low and have been stable for months, now thinks it could be something underlying that the pred affected!
I guess I’m looking for suggestions as to what you all are doing when you experience this painful stuff. I’m 72, was working out 5-6 days a week with walking 5 miles a day 5-6 days a week. Now I’m basically just walking and very little weighs. I’ve incorporated Tylenol arthritis not sure it’s even helping. Any info will be greatly appreciated.

@mezack25 Tylenol helps me now: it didn’t work at first… I’ve been on prednisone for 20 years and now im addicted it seems .. I have had 4 drs.. my last dr said we have to get you off prednisone.. I’m on 5 mg daily and wait till April for a tapering regiment from him.. it’s so bad for your bones! Ask lots of questions about yourself to your doctor.. I recommend a second opinion… best wishes..,, Ive had ra for 20 plus years.. you need to mentally adjust to its pain too… not for the faint of heart

I was diagnosed in May. The basic pain areas for PMR. Now I’m down to 3mg pred and the mornings are awful!
Pain is different than original but just as terrible. Hands, rotator cuff area, neck and hamstrings especially after a walk.
My rheumatologist said to split the 3mg to 1.5 morning and night . He first thought it was a PMR flare up but my numbers are low and have been stable for months, now thinks it could be something underlying that the pred affected!
I guess I’m looking for suggestions as to what you all are doing when you experience this painful stuff. I’m 72, was working out 5-6 days a week with walking 5 miles a day 5-6 days a week. Now I’m basically just walking and very little weighs. I’ve incorporated Tylenol arthritis not sure it’s even helping. Any info will be greatly appreciated.

@mezack25
Give yourself some credit for what you are able to do. You need to realize your body is healing from inflammation which is a big job in addition to all the other energy it takes keep your all your systems functioning. Monitor your exercise tolerance. Your body will feel it the next day if you overdo. I have experienced it myself.
It’s frustrating not to be able to continue your exercise routine as you are used to but realize your body is compromised from this disease.
Best wishes to you!