Confused on what’s considered “normal”

@debbiebas216 I'm not sure there really is a normal being that each of us have different levels of tolerable pain with the treatment. At my initial starting dose of 20 mg my pain was minimal in the mornings when I first got up, normally less than 1 but I still had stiffness and minor aches that gradually went away as I started moving around. When I tapered if my level of pain went above a 2 on my scale of 1 to 10, I upped my dose half of what I tapered down so that I was still a little lower than my previous dose. Then I went a few days to a week at that dose to see how my pain level was in the morning. That's why my rheumatologist had me keeping a daily log with my dose and level of pain when I got up in the morning. It almost seems that your tapering is too much too quickly.

Also, If I over did my exercising or activity for the day, I sometimes paid the next morning with a higher level of aches and pains but I could usually figure the cause due to the activity and adjust more easily. You might want to look through the discussions and comments on "PMR managing symptoms". Here's a link to the search results - https://connect.mayoclinic.org/search/?search=pmr+managing+symptoms.

Thanks John for responding. Information from those who have been there, done that, really helps. I have been keeping a daily log of my pain level (on my own, doc didn’t mention) and what dose I’m taking. I think because it was new for me and she wanted to make sure it was PMR, she also had me go for X-rays shoulders, hips, knees and a sono of my shoulders, I guess to rule out or confirm whatever. When I looked at symptoms, I pretty much checked most of the boxes and will find out for sure on Tuesday for my follow up appointment. From what I’ve read, walking and trying to watch my diet and cut back or out sugar which is a bit challenging seems to help so I’ve been doing that too.
Any suggestions on questions to ask would be helpful too.

One thing about PMR seems to be that everyone is different with their pain, response to treatment and recovery. What you describe is similar to my experience early on. I responded well to 15 mg but the prednisone wore off overnight and I would wake every day in pain, take my dose and then around noon would start feeling relief. Ask your doctor about splitting your dose. Many people do that and it changed things tremendously for me. I take about 2/3 of dose in morning and the rest around 12-1 pm. I feel so much better round the clock. Also my inflammation markers are normal now and they weren’t when my pain was returning every day. I’ve been able to taper my dose regularly. Good luck with your treatment . Hang in there, will get much better very soon.

PMR can be a challenge for primary card doctors that haven't had a lot of older patients with PMR. I think that's why a rheumatologist is a better choice if possible. There are a lot of conditions that mimic PMR.
-- Diseases that mimic polymyalgia rheumatica (PMR): https://www.medicalnewstoday.com/articles/diseases-that-mimic-polymyalgia-rheumatica

The scary symptom that someone with PMR needs to watch for is tender or pain in the head, scalp, jaw and vision problems which might indicate giant cell arteritis (GCA) and need immediate attention and higher doses of a steroid. It is good to watch what we eat for many conditions including PMR. There is another discussion that you might find helpful.
-- PMR Diet: Foods to eat and avoid
https://connect.mayoclinic.org/discussion/diet-and-pmr/
You mentioned wanting to know what questions to ask. Here's a discussion where others shared their suggestions:
-- First meeting with Rheumatologist for PMR, need suggestions:
https://connect.mayoclinic.org/discussion/first-meeting-with-rheumatologist-need-suggestions/

Thank you again. I am seeing a rheumatologist who ordered the prednisone and follow up is tomorrow. I will check out the links you shared and already checked out the original link you shared which was very helpful. I plan on discussing splitting my dose between morning dose and lunch as a few suggested to help with my morning soreness. I have altered my diet somewhat and that does seem to help as well as walking.

PS-I checked out the links you shared. When I had a sono of my shoulders, the radiologist said no rheumatoid arthritis but arthritis and inflammation, blood test showed no lupus and for fibromyalgia I didn’t check most boxes, so hopefully 🤞and thank goodness. I am checking out any and all resources related to PMR so appreciate the referrals.

I may or may not have PMR. It was dx at a about 45 which is young to have PMR, but prednisone(P) 10 mg/ day was like magic. Within 6 hours I was a new man. Now the problem. I tapered to zero and the PMR came back a year later. This process went on for years with the time between PMR getting less and less. Then I went on 2 mg a day and was good for about 4 years but got slight PMR pain that I could live with. It gradually got worse and went on 5 mg per day. That was good for about 5 years and then I just lived with some pain. We have tried other drugs like hydrochloroquine, and sulfasalazine and now Kevzara. Too soon tell if Kevzara is the answer since I am tapering down from 12.5 mg/ day.

I went to a gp and a pa but was not diagnosed until the pa referred me to a rheumatologist. He gave me the words to look up and put me on 10 mg for two months. It took several weeks for me to be pain free and I asked about upping the dose, but he recommended that I stay at 10mg. After becoming pain free I then became superwoman for a couple of months. That was fun, but then he said I needed to taper, but did not insist on a rigid plan. I did my googling and settled on 10% a month. That, of course, is impossible, so I did reducing by 1mg a month until I hit 5mg and then .5mg from there. I have only had one flare at 2mg, but continued the program. I am no longer superwoman, but I am pain free. I did not change my diet or gain weight. I did have trouble sleeping, bone loss, and skin thinning. Everyone is different, so hearing many people's experiences is important. Good Luck!